Hi, this is my first post hopefully someone can help me out. I am 33 and 2 years ago I had RAI for Graves. Since going Hypo I have not felt right and have suffered many symptoms despite "normal" lab results. Within 3 months of starting T4 I had achieved normal levels and my Endo dismissed my problems as not being Thyroid related. In the last 2 years I've had all kinds of tests for different diseases and everything comes back normal. I have all the classic Hypo symptoms, puffy eyes and face, fluid retention, brittle hair thats falling out, muscle & joint pain to name a few. However unlike most Hypo's I am losing weight rather than gaining. When healthy I weighed 120 now I'm about 105 and that includes bloating and fluid retention. Has anyone ever heard of being Hypo and underweight?? Ive experienced food allergies and am taking antifulngal meds for Candida. I was on Levothroid .075 and my TSH was all over the place ranging from .9 to 4.2 within 3 weeks time. My doc said this was fine since I was within the normal range. I was having difficulty concentrating and my memory was pretty bad. I increased my dose on my own in Nov. up to .1 and I noticed some improvement but still not great. I'm confused because whenever I increase my dose I experience a worsening of HYPO symptoms (especially the first 2 weeks). Does this happen to anybody else? When I put all of my test results together I notice a pattern that even though I'm increasing my T4 my T3 seems to be dropping but it is still within normal limits. My last labs looked like this:
TSH 1.1 (.5-5.5)
FT4 1.6 (.9-1.8)
Total t3 101 (70-200)

While on .075 my T3 was closer to 150 but now it has dropped. My doctor never tests Free T3, I'm not sure why.
I confessed to my doc that I had increased my meds and since I have no signs of going Hyper I talked him into adding T3. I have been taking Cytomel for 2 1/2 weeks now and as usual the first two weeks were hell and I felt more Hypo than ever very lethargic and staying in bed all day. Now I'm doing better but havent noticed any great improvement. Has anyone else tried t4/t3. Should I have noticed some improvement by now? I have 4 more weeks till I can take test. Sorry so many questions but its been 2 years since I felt normal and I've been on disibility for over 1 year because my symptoms are so bad. My Endo. says I'm the "odd bird" because in his 22 years experience he hasnt encountered someone with so many problems. I find this hard to believe since all of my symptoms are HYPO symptoms except for the weight loss. Any advise is welcome.
Thanks,
Rachel

Rachel, this is a common reaction from doctors. It's frustrating and it's sad, but it happens more than you'd think. Sadly, most just do not understand how all encompassing the thyroid is. It effects every aspect of metabolism. How is your cholesterol? Often LDL is elevated and HDL is low because thyroid is responsible for lipid metabolism. Most doctors don't even know this.


Yes, it happens. Sometimes hyperthyroid pateints are overweight; there is no set group of symptoms we must all have. It possible that you're simply not absorbing all the nutrients from your food. Are you also constipated? It's a pretty common hypo symptom.


Ack, how do you feel about finding another doctor? A TSH for 4.2 is NOT fine! A doctor who doesn't know this is not someone I'd want 'helping' me. There are some really good Drs out there - finding the right one can make all the difference in the world for you.

Have you had your antibodies tested lately? I'm not 100% of this, but what you're describing sounds almost like Hashi's. I've read research where some scientists believe Hashis and Graves are the same disease, just opposite ends of the spectrum. Did you have all your antibodies tested at one time (I'm thinking you must have, how else could they have decided you had Graves) ? Did you ever test positive for Tg antibodies? These often show up in both Graves and Hashi's patients. If you still have the antibodies it would explain just what's going on with your TSH jumping all over the place.


Feeling worse after you start a dose is common, Sunshne. Your body has to adjust to the new level, your metabolism has to fight to keep up. As you get healthier it will lessen.


Your FT4 looks good; your Total T3 is very low. I suspect your FT3 is also low as a result, and it's why you feel so awful when you up your dose. I think going on the cytomel will make a difference for you in the end. You look like you're not converting T4 --> T3 well.


Again, bad doctor! He's likely not testing FT3 because he's been told over and over again that if you have enough FT4 then you've got enough FT3, the latter is made from the former. If you don't convert it well though this isn't the case. In your situation I'd say you're not converting.

Will the Dr be testing FT3 in a few weeks now that you're on the Cytomel? If he isn't going to you need to find a new doctor pronto. You need that monitored.


How much T3 are you taking and when do you take it? T3 is very fast to metabolise and it doesn't last in the body long. Many of us find we do better when we take it twice during the day. Once in the morning and another dose 6 hours later. If you're only taking it once a day try dividing that dose and taking it in two separate doses; it might help. It's also posssible you're not getting enough of it. Are you increasing it every week or so, is that why you have to wait 6 weeks? Typically 10 days is long enough to gauge T3 supplementation.


I think you need to find a better doctor, Rachel. This is a good place to start looking: TopDocs - these are doctors who've come recommended by thyroid pateints like us.

Thanks,
I have a few questions, that might help:

When do you take your T4? Do you take supplements and if so when do you take them? You need at least 2 hours between Thyroid meds and supplements, and 4 hours if you're taking calcium, iron or fiber. Alternatively, you can disolve the thyroid meds under your tongue - this way you bypass the stomach and the meds aren't going to compete with other substances for absorption. It also means you can eat right away.

Are you taking selenium, b12, vit D and E and magnesium? These are vital to thyroid health and they might make a big difference in how you feel. If you still have antibodies the selenium alone might make a huge difference in how you're feeling. Here's some info on the supplements and dosages

What are you eating food wise? Do you eat lots of Soy? If so, cutting it out would probably make you feel a lot better.

I think the T3 will eventually help you out; it might be that you'd do better on a natural thyroid hormone, though. Many do; especially when they have no functioning thyroid left. If you punch your zip code into the Armour Website you can find a doctor in your area who prescribed it - these doctors are usually much better at treating thyroid.

All the best,
Nat

Nat, thanks for your input. I have never had my cholesterol tested, my doctors have spent too much time directing thier atten. away from my thyroid. Yes I am constipated as well and I do believe the cause of the weight loss is malabsortion. I tried taking a diuretic once for the fluid retention but when the water was gone I was left with nothing but bones. It freaked me out so I'll never try that again. If I am not absorbing nutrients from my food could I not be absorbing all of thyroid meds as well? I eat plenty even though my appetite is nil but I am not able to gain weight & if I do I cant maintain it. Guess I'll have to wait for thyroid to be corrected. If I was tested for antibodies it would have been prior to Graves diagnosis. I dont remember that being done. I had a radioiodine uptake test and a scan of my neck was done. Thats when I was told I had Graves. Right now I am taking 12.5 of Cytomel three times a day. My doc tests T4 after 8 wks and says we should wait 6 wks for the Cytomel. I think I will wait one more week and then test that should be more than enough time. I take my T4 in the AM
and I never eat or take anything else for at least 2 hours. I do not eat soy products either. I tried taking multivitamins but it seemed like they made me feel worse, it could have been that I was just having bad days but I know they didnt help me. Somebody told me that if I was not absorbing food properly I will not be able to absorb vitamins so I might as well flush them away. My Doc is at least willing to prescribe Armour and Cytomel. I would like to see somebody else but would have to pay out of pocket so thats why I havent. I did try Armour once but it was a small dose and I felt really bad. It was 30mcg once a day. I'm not sure how that compares to Levothroid .1 but I'm assuming its a great deal less.

You know, Rachel, that's an excellent observation! I would definitely be taking my thyroid meds sublingually - disolve them under your tongue, you by pass the problem!


Wowzers, OK, you're on enough T3 I really think you hit it on the head, Rachel; you're not absorbing your meds or your food! I wouldnt be surprized if you noticed a change by taking them in under your tongue and letting them disolve there - the Cytomel as well.


You're right 30mcgs of Armour contains 4.5 mcgs of T3 and 19mcgs of T4. That would be .019 of levothryoid

Thanks again Nat, I'm going to try dissolving the meds under my tongue, I'd never even heard of that before. Hopefully it will make a difference. I know I'm taking quite a bit of T3 (my doc wanted me taking 12.5 only once a day) I guess I am impatient and hopefully I'm not causing more harm than good. Everything I've read about T3 though says that because of its short half life people generally feel the effects of it pretty quickly. I honestly have not noticed any changes. I take lots of hot baths just to stay warm. I'm very familiar with the symptoms of excess thyroid and with Graves I had a huge appetite and I was amped all the time I was always a warm person. Frankly I would welcome some of these symptoms right now but so far not even a hint of too much hormone. Wow! no wonder I felt so bad on Armour! .019 of Levothroid is almost nothing. What was my doc thinking?

That was rhetocial, right?

On that much T3 I would expect you'd feel SOMETHING- the fact that you're not just confirms that it's not being absorbed.

Here's a thread with some info on the sublingual method of taking your hormones

Just be on the watch for those hyper symptoms... if you're really not getting everything suddenly absorbing it might be a shock.

Nat

Hi Rachel

When your thyroid has been zapped by RAI it can no longer play a useful part in generating thyroid hormone. Consequently your pituitary no longer needs to release TSH to stimulate your thyroid. If it does then you are not taking enough T4. Your TSH is well into the range, so it seems you are not getting enough T4. 1.6 micrograms of T4 per kilogram of body weight is the recommended replacement dose, but you need more at first to build up your supply of bound T4. The aim is to push your free T4 well into the top half of the normal range.

If your TSH is up and your thyroid can produce anything at all it will produce much more T3 than T4, especially at night when your TSH peaks. Then you run out of T3 half way through the next day. This can also cause your TSH to oscillate up and down over the course of a week. A couple of good days, deterioration, and then really bad days, then a couple of good days...

Most doctors assume that if your TSH, T3, or T4 is in the "normal" range, then you can't have a thyroid problem, no matter what your symptoms. This is like arguing that because all dogs have 4 legs and my cat has 4 legs then my cat is a dog. If one measured the TSH etc ranges for people with thyroid problems they would overlap the "normal" ranges. My TSH etc were "normal" but I was badly hypothyroidal, and taking T4 changed my life dramatically! Too many doctors rely too much on tests, which they misinterpret, play down the the patient's symptoms and cries of anguish if the test results are "normal" .

Docators also don't know that the TSH range is squashed up at the bottom, ie the majority (at least 80%) of normal healthy people have a TSH between 0.5 and 2. A TSH of 1 means your pituitary is still trying to generate more thyroid hormone out of your zapped thyroid because your blood levels are too low.

I became hypothyroidal about 12 months ago, and for the first time in my life I started to lose weight - 10kg in 3 months. However, I had been diagnosed with insulin resistance, and so maybe it was the low carb diet. Being hypo can suppress appetite, so weight loss is not so hard if you only eat when you feel like it.

I also suspect that I might have a malabsorption problem, caused by an excess of mast cells in the gut - I get reflux, nausea, pains, diarrhea, and food cravings - cheese, nuts, bread etc - which I have to avoid entirely because I just can't stop when I start.

My energy fluctuates a lot, and the possibility that I don't absorb my T4 well on a bad gut day never occurred to me. I am going to try the sublingual trick to see if it helps iron out my mood & energy.

It's so nice to hear fellow sufferers talk - much more informative than any doctor I have seen. I hope I have added a little to the excellent advice already offered.

Marc

What a great analogy, Marc.

This is why I hate blood tests. They are always the last place a problem will register.

Find a doctor that does hair mineral analysis testing and saliva testing for hormones. I'd be willing to bet something out of the ordinary will show up on those.

Remeber, it is best to try and get your body to properly produce its own hormones as opposed to taking synthyroid. Once you begin taking exogenous hormones, your body downreugaltes its own production and causes other problems.

Are exogenous hormones necessary sometimes... yes. It is rare in my experience but is necessary sometimes. Be sure to use armourthyroid as opposed to synthyroid as the armouro is natural. But, only if there is no other option.

If you're not truly hypthyroid I agree. However, if you are, your body has already downregulated itself, hence the need for the hormones your own body cannot make. Taking ANY form of exogenous hormones will downregulate your own body's production, be they in the form of bio-identical T4 (synthroid) or natural desiccated thyroid (Armour)

Marc,
I enjoyed your comparison of lab results to our 4 legged friends. I also had the same food cravings and symptoms you described. Do you feel worse after eating cheese, nuts, or bread? Maybe you have a yeast problem...I had read about this but was not sure what to make of it. I decided it wouldn't hurt to take antifungal meds and avoid foods that feed yeast. It actually worked for me and my symptoms improved. The problem still comes and goes though especially if I slack off and start eating anything. I read there is a link between yeast overgrowth and Hypothyroidism. Not sure if this is legitimate though. I think Yeast also can cause malabsorption problems as well. I don't think my problems will resolve until my thyroid levels are corrected. Something else I'm curious about...how does someone know whether or not a part of their thyroid has survived RAI? I've asked my doc about this possibility but he says that its not relevant either way as long as TSH is "normal". I'm wondering if a part of my thyroid is still functioning & could it be throwing things off for me? I've only gone Hyper once since RAI (5 months after) I had been on the same dose for 3 months and felt Hypo. I went through a stressful time for one week and during that week all of a sudden I was hyper and really feeling it too. This is similar to what would happen to me prior to RAI. Graves symptoms were only present for me during stressful times.

Sunshne24, I just read and posted a link to an article about Graves RAI treated people that can have very low TSH yet have hypoT symptoms. It sounds like TSH is really a poor indicator for folks like us. Also, the range doctors are using is too enormous. It should be something like .3-2.5 and people feel better in certain parts of the range.

I think you should get your Free T3-T4 checked. That's what I'm going to do, once my healthcheck form gets to me.

Kajun - do remember that people who have had RAI treatments no longer have a thyroid gland. Nothing they can do will stimulate thier body to produce more thyroid hormones and weaning them off their meds is not a wise idea.

Re: TSH - my understanding is that TSH levels are tied to T4 levels; not T3. Therefore if your FT4 is fairly close to normal but you can't convert so your FT3 is in toilet, then your TSH won't be very elevated thus entirely masking your problem. This is why the FT tests are so vital.

Right you are, Ms. Eyes

Rachel

I am fascinated by your reply about yeast overgrowth, food cravings etc. I have been wondering about it for the last year. My cravings are long standing but got worse since I went really hypo, and they only occur in the afternoon. Unfortunately the medical profession seems rather negative about yeast, leaky gut etc (probably because alternative practitioners are positive about it), so its hard to find solid scientific data. Even so, I shall pursue it more vigorously.

I have tried sublingual thyroxine (T4) a couple of times following suggestions here and it seems to help but its early days yet.

The issue of mastocytosis as a possible cause of my thyroid problem is another thing again. It could affect gut absorption, and a lot of other things related to metabolism. Sigh. The big picture is so big! Too big for the medicos. The endos say, see an immunologist. The immunologists say see and endo. Oh, and a gastroenterologist. And a skin specialist. And a psychiatrist. No wonder medicos can never see the big picture.

Marc