Finally got some test results to share so I'll repost my issues and what's been going on.
I've been taking 100mg Levothyroxine now for well over a year and experience constant problems with wind. I'm literally belching all day, my stomach feels bloated and the associated problems with going to the toilet.
I also suffer from tiredness, have alopecia (eyebrows thinning), brain fog and memory loss.
I'm taking Pantoprazole for acid reflux and I've also had all the tests for digestive issues, cameras both down and up, breath test, speed of digestion test and everything is clear. I'm currently trying a low fodmap diet but nothing seems to work or help my symptoms.
Now looking through various research (and there's loads to go at) I'm come to the conclusion that its something to do with the levothyroxine or maybe low stomach acid. I really would like to get this sorted as its been a pain for a couple of years now even to the point where I've just accepted feeling the way I do as normal. I would appreciate any help from anyone who has had similar issues.
My results were
TSH 1.51
T4 20
Which I'm assured are normal and within range.
I've also done the baking soda low acid test and to my way of thinking its positive as I have belched around 3 to 4 minutes after taking. I even tried with just a glass of water (no baking soda) and belched within a minute.
My next step is the full thyroid profile from mymedichecks which I have initiated today and I'm booked in to see the GP on Tuesday.
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paulnelson197
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Good you are doing Medichecks test. Make sure to test vitamin D, folate, ferritin and B12 too. That's the thyroid plus Ultra vitamin
Just testing TSH and FT4 is completely inadequate
Low vitamins tend to lead to poor conversion. So essential to test vitamins and FT3.
Do you know if you have Hashimoto's? This is more commonly called autoimmune thyroid disease by GP, This is diagnosed by high TPO and/or high TG thyroid antibodies.
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Hi, thanks for the reply. Lots of information to digest, I suspect I do have hashimotos but have never been diagnosed with it. I've been type 1 diabetic for 20 years which I guess is an auto immune disorder same as hypothyroidism. The full thyroid profile should hopefully tell me more.
The PPI was initially diagnosed from the raw and burning throat, spitting blood in the mornings which i still have and still get to this day.
Something is definitely not right and I need to get to the bottom of it.
I am sorry you are suffering. It is usual for hypothyroid people to have low 'stomach acid' but as symptoms are nearly identical to 'high' acid, so doctors usually give us meds to lower stomach acid.
When you state your results, it is helpful if you also state the ranges. Ranges enable members to respond as labs differ in their machines, as do their ranges. Just to complicate things.
Are you aware that the blood draw has to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of hormones and the test and take afterwards? This helps keep the TSH at its highest as that appears to be all the GP looks at (maybe T4). The most informative tests are TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.
Many people feel an improvement if they are on a T3/T4 combination but T3 has become very expensive in the UK that it has been withdrawn from being prescribed. Some members source their own but that is also getting more difficult. NDT (natural dessicated thyroid hormones) are also an alternative being the original thyroid hormone replacements prescribed since 1892 in different forums but saved lives since then. The only problem there is that the BTA have now made False Statements about this although it was widely prescribed in the UK. So it has been withdrawn.
One of our Advisers wrote the following to the Associations and despite three yearly request for a response, they never did before his early death.
Thanks for your reply, I didn't know that about the blood tests so I can now do it correctly when the test pack turns.
I'm now really interested to see how the results pan out because it seems the thyroid tests I've been having don't really give the true picture, not sure if this is due to cost on the NHS side but left untreated these issues could be very serious in the future
Doctors, and I assume the Endos, seem to only refer to the TSH and T4 but they don't really inform how we, the patient, feels. They rarely test the Frees i.e. FT4 and FT3 and from this link you will see why they are useful, but I suppose it is being careful with the money being spent on the NHS but some tests are important to try to explain why patient is feeling worse and not improving.
It is a big learning curve for us if we feel worse when first given levothyroxine and people usually improve as dose is increased but some doctors do not increase if TSH is 'somewhere' in the range (which is usually up to 5) when the aim - for us - is 1 or lower with FT4 and FT3 in the upper part of the ranges.
Initially I had hyperthyroidism and was on cabrimazole, 2 of the nuclear tablets later and I'm now hypo, and this is when my symptoms appeared. I think then it was a case of quickly moved on from endo to the Gp and then it's all down to a blood test every 12 months to confirm I'm 'in the limits'.
Seems to progress any further I've got to take the initiative because its very simple to just dismiss a patient and pass them onto gastro and lots of expensive tests later, still in the same boat. Hopefully get somewhere soon.
You're correct. I think the GPs know nothing more than TSH and T4 and if both in range then hypo isn't the cause.
It is if we don't have sufficient dose as our body struggles. We have millions if not billions of T3 receptor cells (T4 is inactive and has to convert to T3 - so we must have sufficient T4 and be able to convert).
As you originally were hyperthyroid, this was presumably Graves' disease (autoimmune)
Antibodies don't necessarily disappear after RAI (or you can have Hashimoto's at same time)
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Professor Toft recent article saying, T3 may be necessary for many. Note especially his comments on current inadequate treatment following thyroidectomy or RAI
That's some great information. Thanks for that and I shall get a copy of the document, I did try glutton free for a week when I was trying to eliminate aspects of my diet but nothing changed. I think there's several things that need to come together for any significant improvement.
I’ve have them type of problem as well. But I’m on 175 Levo a day. I’ve had a scan to make sure all organs are working. But yet to have the camera. It’s really uncomfortable around monthly circle. And in a lot of pain some times. I had the breath test. They don’t like keeping me on pantoprazole all the time. And will only give it to me if my doctor see me. I was told to try premint tea or premint capsules to help from one of the nurses. I’ve had a fully thyroid removed due to cancer. And some times it doesn’t work. I’ve just been putting up it with it. As it’s getting more difficult to see someone in the doctors about it. Hopefully you will find the answer soon. You are looking for.
Hi thanks for the reply, sorry for all your problems hope there's some light at the end of your tunnel. I had the camera down the throat when they were checking for gastro issues. I would definitely be sedated if I had it again it was bearable but a touch uncomfortable. I also had the peppermint tea and capsules advice - they did absolutely nothing. It's quite a complex issue that I feel doesn't get the attention it deserves.
Getting vitamins tested, supplementing to bring to optimal, can then allow TSH to increase as thyroid hormones can be utilised better, so you can get dose increase
First of all Haze1975 I am very sorry you've had your thyroid gland removed. I have mine but couldn't get well on levothyoroxine at all. In fact I was far more unwell on it than before I diagnosed myself when TSH was 100. All doctors/specialists gave me umpteen diagnoses and none were correct.
Ask if they will add T3 to your T4 and it could help enormously. Some source their own T3 as NHS withdrew it without notice a few months ago but TUK and others have a case before the Lords who are investigating - why the price escalated so high.
Considering that T4 is an inactive hormone and has to convert to T3. T3 being the only Active Thyroid Hormone and it is needed in all of our T3 receptor cells they should at least give you a trial. If not, ask if you can have a trial of NDT (natural dessicated thyroid hormones made from pigs' thyroid glands')this is the very original and contains all of the hormones a healthy gland would but they also withdrew this due to False Information by the British Thyroid Association. Considering it has been used worldwide since 1892 with people recovering because they didn't have blood tests but doctors knew all symptoms and they were given a trial. The main concern was relief of patients symptoms not to get the TSH into some range.
Stomach problems are usually caused by low stomach acid and many members take Betain/pepsin tablets or ACV with meals (mixed with water or juice as it is quite strong).
I had three weeks of a feeling of pressure just below my chest .I thought it was a heart problem but the GP diagnosed acid and put me on a ppi for a month .Seems to be working .I am aware that low stomach acid is often the cause of gut problems if hypo but it seems you can have high acid.
If seems like PPI's are easy get outs and are prescribed too easily. It's worth investigation to get the true picture before accepting what you're given. I've been doing the low stomach acid test all week and my suspicion now lies with that.
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