I've just got my T3 results back. There was a delay because they were sent to a different lab. I was hoping so much that my T3 wouldn't be normal as I was thinking I may not be converting T4 to T3 and wanted answers as to why I have so many hypo symptoms. All my results are in range:
T3 5.2 pmol/L (3.5-6.5)
TSH 0.04 mlu/L (0.35-5.5)
T4 18.3 pmol/L (12-22)
I am on Levothyroxine , 100 mg per day. Finding this forum gave me the courage to challenge my doctor. I went with an extensive list of hypos symptoms. Told her I haven't been right for some 3 years . Asked her if I could try NDT or combination T4/T3 therapy. She refused NDT on the basis it is not approved by RCP or nice. Told me it wasn't safe. She has referred me to an Endocrinologist. I don't know whether he will prescribe T3 or NDT.
I know these symptoms are not in my head, but how can I make a case for T3 with results like these?
I'm still waiting for B12, etc results.
My Endo appointment is the 4th January.
I was diagnosed 5 years ago. I did feel well when my T4 went up to 25, but was told to reduce my Levothyroxine .
I hope you can help me.
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julesdawn
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Julesdawn, it doesn't look like you have a conversion problem, FT3 5.2 is almost in the top third of range. A Levothyroxine dose increase would raise FT4 which would in turn raise FT3, but would suppress TSH which many doctors are reluctant to have happen. Read Treatment Options in thyroiduk.org.uk/tuk/about_... and email louise.warvill@thyroiduk.org.uk for a copy of the Pulse article if you would like to show it to your GP.
Low/deficient ferritin, vitamin D, B12 and folate are common in hypothyroid patients and can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. It is worth asking for them to be tested.
NDT isn't licensed for UK use and is rarely prescribed on the NHS. Your doctor is wrong to say it is dangerous but won't know any better as she won't have been trained about it. Most members using NDT have private prescriptions or buy on the internet and self medicate.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Thanks for your reply Clutter. I have had B12, folate and ferritin tested late last week and waiting for results. I will post results when I have them. If they are also in range not sure where to go next. I have sourced a supplier for NDT so perhaps I should try and see if this helps ease my symptoms.
I'm now not sure what an Endo can do for me given these T3, T4 and TSH results.
My current symptoms are:
Muscle, skeletal pain - I'm bent double when I've been sitting, sleeping.
Brain Fog
Fatigue
Low mood
Excruciating cramps in feet, toes and calf. Plus tingling
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Julesdawn - most of the symptoms above can be caused by more than one thing unfortunately which makes correcting them problematic at best. For what it's worth, I've had most of the symptoms above (except the cramps and hair loss) and the majority have been sorted out with a combination of B12 and correcting my thyroid issues. My guess is that you'll find that when the B12, ferritin and folate results come back you'll be low in one or all of them - once the results are back, post them here with the ranges and you'll be able to get some advice.
hi there jules, from my limited knowledge it would seem that your results , so far , are at an optimal level --- but I think that you need to have other tests [ from the same bloods ] i.e. ferretin ,folate and b.12 ] all to be done together to show the FULL picture .... this does give a better view for the g.p. as well as giving you a reason for your health situation ------ all of these factors can have an effect on YOUR health and need to be treated together .......I hope this may be of help alan
Thank you. I checked out Louise's list but unfortunately there wasn't anyone in my area. I'm not holding out a lot of hope with the Endo I'm going to see and will probably go down the route of self medicating NDT. I really can't carry on like this and I'm sure you know that feeling. I'm beginning to feel like a hypochondriac!
Testing will require you to go to a hospital as the parathyroid hormone is very delicate - samples have to be refrigerated immediately and analysed as soon as possible.
You don't need to be tested in hospital, bloods can be done at the GP, as long as the sample is taken just before the lab collects and the time of the test noted on the form.
Certainly it is possible. But the requirements of some tests are quite demanding:
TH is labile; serum or plasma should be separated as soon as possible.
EDTA tubes must be filled to capacity. Separation should ideally take place in a refrigerated centrifuge. Specimens may be stored at 2–8 C for up to 8 h before analysis, but
for longer storage should be frozen
If the GP surgery has a suitable freezer, that might be an option.
A PTH test I had done at the hospital phlebotomy unit could not be anaylsed. Next time, I made sure they took it from the patient area to the lab as soon as it had been drawn.
My PTH tests have always been done at the GP, taken just before lab collects so no fridge or freezer at GP required. I have had Hpth for several years and not had any problems with bloods taken at the surgery. I have not heard from any of our parathyroid forum members of them needing to attend hospital for PTH tests, they are done as usual at the GP.
Its fairly uncommon but with ongoing symptoms best to rule it out. Hpth is to do with the parathyroid glands (not connected to thyroid conditions) , there can be several causes of PTH problems, most common an adenoma, treatment is surgery. Results to look out for would be low vitd, high calcium and parathyroid.
I've just been reading on the thyroid uk website about the gene which means that you can have normal thyroid results, but the T3 isn't getting through to the brain... it looks as though the results have still not been replicated, but maybe worth getting that tested after making sure all your nutrients are at a good level.
Anyway, maybe worth reading up about it, Julesdawn and seeing what you think.
I'm going to order the D102 test so that I will know whether I have the faulty gene. Thanks again. Only thing is with it being almost Christmas I may not get results before my Endo appointment on 4 January.
A couple of years ago, when I was on levothyroxine, I paid for some private testing to be done. If anyone had looked at just the TSH, FT4 and FT3, the results would have looked very good. But luckily I had paid for a reverse T3 test and it was hugely over the range. I felt absolutely diabolical, and was struggling to walk because I was staggering so much.
At the time I was very iron deficient, and I'd been ill for several years with a non-thyroidal problem. Switching to T3 only, and fixing my iron deficiency and taking lots of supplements helped me to return to better health (although it still isn't good).
Perhaps you have a reverse T3 problem or a deficiency that needs treatment?
Thank you humanbean. Would you perhaps know the approximate cost of a private blood test? Is there any information you can share with me regarding reverse T3?
Obviously all the tests I've listed include different things as well as reverse T3, so they aren't directly comparable. I think the first one is the best value for money, particularly with the Thyroid UK discount.
Reverse T3 and normal T3 slot into the same receptors in the cells of the body. Reverse T3 is a virtually inactive form of T3, whereas normal T3 boosts the metabolism of cells it gets into. Most of the reverse T3 and normal T3 in the body is made using T4 as the raw material, or (I think) can be created directly by the thyroid. If the body has excess T4 it will be disposed of by converting it into reverse T3, which will be quickly broken down into simpler chemicals then gotten rid of. Also, if you are ill (with the flu, for example), your body needs you to slow down while the immune system fights off the flu. It achieves this by creating more reverse T3 and less normal T3 for a while.
That is probably not a very good explanation of what reverse T3 is for, but it is how I understand it.
Some blood tests are finger prick tests. You get sent little tubes and lancets to prick your fingers and squeeze out some blood into the tubes that way.
The other kind are the standard kind of blood tests, involving sticking a needle in the crook of your elbow.
That can be difficult.
Some people know someone who can do it for them - a nurse, a phlebotomist, a doctor etc.
Some people pay for a phlebotomist to do it for them.
Some blood tests offer phlebotomy as part of the price of the test - Blue Horizon has a deal with Spire Hospital and Nuffield for that, for example, but it is only available on certain tests.
You could phone up the phlebotomy department of your local NHS hospital and ask them if they will do it. Usually they will for a fee, but that fee varies enormously from hospital to hospital.
You could ask your GP if the surgery nurses will do it (either for a price or for free).
You could ask any local private hospitals whether they would do it, and what the cost would be.
Your TSH is low from what you posted, as is mine, unless that is a typo. I don't feel so good either. You could be over medicated, switching you to hyper from hypo. Also, thyroid tests can give you false negative results, which I have found from my research. Just a thought here.
Also, forgot to say that all of my test results kept coming back negative, even though I had ALL of the symptoms of hypothyroidism. Medication stopped my unnecessary weight gain, as well as some of the other symptoms I was having. False negatives with results in normal ranges. Go figure.
Hi julesdawn, I noticed your TSH is below range. When mine has gone too low out of range like yours I begin to feel as if I’ve gone hypothyroid, even with normal Ft4. A decrease in dosage by 12.5 mcg would usually bring my TSH back into range and I would feel better. The endo will probably suggest doing that for you. Also, I never felt optimal on Levothyroxine even with normal blood tests. The last time I was over medicated I was on 112 mcg of Levo. My doc let me switch to 1 grain of NDT which is supposed to be equal to 100 mcg. of Levothyroxine. I found it to be far superior and oddly I have a higher TSH (1.2) with more symptom relief! Five years ago, I went back on Levo and it was awful. I just recently got my doc to to switch me back to NDT, and I feel so much better. I’m in the U.S. and my insurance doesn’t cover NDT anymore so I pay out of pocket. If you can’t get NDT, you could ask about having synthetic T3 added to your Levothyroxine. Normally they reduce your Levo by 25 mcg. And add 5 mcg. of T3. Since your TSH is low they might want to reduce the Levo a little more. Anyway, I thought it might help for you to hear my experience. Best wishes!
Hi if you have a look you will see my post was 4 years ago. Since that post I tried NDT which made me worse but fortunately my Endo was supportive of T3 only. Despite a few wobbles I've been very well for over 3 years on T3 only and would not go back to Levothyroxine or NDT.
My TSH has been in range since I started T3 only, but my last test was .06 which has made my new Endo twitchy. I'm now more concerned about how to bring it up without making myself ill by stopping my T3 for some days before my next blood test as he is threatening to reduce my T3. I'm on 40 mcg a day which is not a large dose. I have no symptoms whatsoever of being over medicated.
Oh, sorry didn’t notice how old the post was...lol! Thanks for sharing your experience. Goes to show how not everyone reacts the same to medications. I’ve known others who do well on T3 alone, and they feel well with a suppressed TSH. Doctors do get funny about it. There are some that don’t care so much about TSH as long as there are no symptoms and the other levels are good. Hopefully you can convince him that the TSH is irrelevant in your case! Best of luck! P.S. - you could try skipping 1 pill or a 1/2 pill per week for a few weeks before your test. It might bring your TSH up a bit to make him happy, and be less noticeable on your heath than skipping several days in a row. Just a thought...
You could actually do with a Levo increase. Your FT3 is only 57% through range and your FT4 only 63%
So absolutely get a Levo increase first! Self medicate that extra dose if you need to esp if as you say you need a very high FT4 to feel well.
These symptoms are NOT in your head and I’m so sorry that your Dr doesn’t see that if you have wiggle room to go to the top end of the ranges then what the hell is the point in a range 😩 who knows what your optimal level of thyroxine was before your thyroid decided to pack up and resign 😩
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