Hi there, I wonder if anyone here could help me... I have been taking levothyroxine for about 10 years ever since I had radiotherapy treatment to kill off my thyroid. Over the last year or so, I have become more and more bloated, to the point now where I feel and look bloated from the moment I wake up until the minute I go to bed, it's awful. My GP thought my dodgy blood results may be being caused by my doseage (I take 137mcg daily), so that was played around with a couple of times - no success. My blood results are as below -
T4 - 16.4 (within normal range, my T4 usually is or is actually on the high end of normal)
TSH - 11.8 (Massively too high)
T3 - 5.2
As you can see, if my TSH is 11.8, this would suggest my dose needs increasing, though my T4 levels are fine. Also, if I increase my dose from 137.5mcg daily, to 150mcg, which I did around 5 months ago, I feel overactive and start experiencing the related symptoms within 7 days...
The GP has now referred me to an Endo, which I have to wait just over 4 months to see. The reason I thought my bloating and thyroid was related is because I have always had issues with bloating, though it was mild and seemed to be more set off by what I ate, though it was never this bad. This level of bloating and discomfort which I am now dealing with seemed to have started when my dodgy thyroid results did.
Any thoughts or advice would be greatly appreciated, I'm out of ideas and had enough of living with this.
Thanks in advance,
Matt.
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mattg93
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First, I am really very sorry that you had your thyroid gland removed at the age of 14, so you've never really been 100% healthwise.
My personal opinion, and I am not medically qualified, is that anyone who has had their thyroid gland removed altogether should - at the very least - be prescribed a combination of T3/T4.
Levothyroxine (T4) is an inactive hormone and its job is to convert to T3 (liothyronine) and it is T3 which is the Active Hormone, it is needed in the millions of T3 receptor cells in our body to give us energy. Brain and heart have the most need of T3.
Most on this forum have found that most doctors and endocrinologists cannot look past blood test results. In the past - before levothyroxine and blood tests - we were diagnosed upon our clinical symptoms alone and given NDT (natural dessicated thyroid hormones made from pigs' thyroid glands). It contains all of the hormones our own healthy gland would have.
Going by your very high TSH alone, you are very undermedicated.
The aim is a TSH of 1 or lower and a Free T4 and Free T3 in the upper part of the ranges.
Doctors and endocrinologists, we've found on this forum, are poorly trained. It seems quite easy to look at a blood test number and prescribe or not but they forget about the disabling clinical symptoms which are also supposed to be relieved.
Some hints for you to follow so that you can recover your health. Members are very helpful and most on this forum have had to 'Do it Ourselves'.
Always get the earliest possible blood tests, fasting, (you can drink water) and allow a gap of 24 hours between your last dose of levo and the test and take it afterwards. This helps keep the TSH at its highest as it drops throughout the day and may prevent the doctor reducing dose.
You take levo (or any thyroid hormone replacements) when you get up with one full glass of water and wait an hour before eating. Food reduces the uptake of hormones.
or
At bedtime as long as you've last eaten about 3 hours previously. Miss this dose if having a blood test next a.m. and night dose as usual.
Thyroid hormones should be taken with one full glass of water and wait an hour before eating.
Always get a print-out of your results with the ranges. Ranges are important for members to comment.
Doctor should also check B12, Vit D, iron, ferritin and folate.
The aim is a TSH of 1 or lower and Free T3 and Free T4 in the upper part of the ranges and, most important, all symptoms should have been relieved. Always get a print-out of your results, with the ranges, for your own records and you can post if you have a query.
Thank you very much for coming back to me so quickly. Your points are very interesting, especially around the fact that I should be taking both T3 and T4, as this latest set of results were done after I requested that my T3 was specifically tested as it had not been previously. From what I have read across the internet, I would agree with what you are saying on this, so thanks.
Also, many thanks for the hints, I shall definitely bear these in mind going forward. Something else that may be worth adding, I do also suffer from constipation which the GP has prescribed laxatives for (which is a symptom of under-activity, but I know this can’t be the case).
If so you may find strictly gluten free diet helps, or is essential. Worth trying for 3-6 months. If you find it helps stick with it. If not, reintroduce gluten and see if symptoms get worse
It's often a waste of time seeing the wrong endo. Vast majority are Diabetes specialists not Thyroid
First thing is to check if one you are booked to see is on Thyroid UK recommended thyroid specialists list
The other option is to see one privately for initial trial if T3, then get transferred back into NHS
Email Dionne for the list
tukadmin@thyroiduk.org
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Professor Toft recent article saying, T3 may be necessary for many, note especially his comments on current inadequate treatment following RAI
New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Thanks for taking the time to write back to me. Yes, I did have radioactive iodine treatment for my graves. That is an interesting point on the gluten free diet, I did have a biopsy 10 years ago to test for coeliacs and a blood test recently to test again, but both negative. I did try gluten free for 10 days or so, which didn’t seem to help but was probably not long enough I assume.
Interesting thoughts on the endo I’m booked to see, I will certainly look into this. Also, I didn’t realise private tests were actually a thing, so thanks for bringing this up.
I guess I shouldn’t be surprised by the NHS being ripped off, this seems to be a trend...
Is it definitely bloating? Or more “solid” than bloating? I’m thinking mucin (which is something hypothyroidies do get when there’s something about their thyroid hormone replacement not working for them - either not enough or the wrong type).
If it’s definitely bloating - water retention? - then if I was your doctor I’d be considering something else other than it being thyroid related. Heart issues for example being one, IBS, IBD, Coeliac Disease etc. Where’s the bloating - everywhere? Arms, legs, belly??
Thanks for taking the time to write back to me. To be honest, I’m not sure, though it certainly is “solid”, very much so. I look 5 months pregnant, and touching it feels extremely hard.
Coeliac I have been tested for and been negative and the bloating is only the stomach, no where else.
This is very interesting what you have mentioned, I will definitely look into this. Thanks again for your time.
From my experience having such severe bloating means that there some gut issues involved. And, the reality is that those of us that have thyroid problems have gut issues as well. Not sure which one comes first, but it's a big issue.
Have you ever tested your thyroid antibodies to see if you have an autoimmune problem. Even with the thyroid gone the autoimmune stays unfortunately.
Going back to bloating many people do much better when they eliminate grains, sugar, and dairy. Sometimes nightshades and legumes can be a big culprit as well. If you stay away from them for a while, and then try to introduce them back one by one and wait at least two days in between, the body will tell you which ones don't agree with you. Unfortunately, sometimes even the healthiest foods can hurt some of us.
A good quality probiotic can help too.
You may have a gut flora inbalance.
There are so many things that can happen in the gut that can result in bloating and other digestive issues.
I'm not sure what tests are available in UK but if you have the money for a gut analysis test, you may get the unswer to your problem.
Probably you can order one in US
It may even be cheaper.
You can look up this dr. Izabella wentz
and you can get a lot of insight about thyroid disease and the gut.
Again, even if you don't have the thyroid anymore, they can still be related if it is an autoimmune element in there.
Many thanks for taking the time to write back to me. I believe yes, my antibodies have been tested but not for a few years now. On foods, this sure may be the case, I have just ruled it out currently as I seem to have the problem no matter what I eat. Maybe it’s wishful thinking that I can hit 2 birds with one stone here.
I have been on pro biotics for a few years now, recently stopped as I didn’t notice any benefits, my issue is still the same.
That is very interesting, thanks for letting me know regarding these things, I will certainly look into this.
I noticed the suggestion about digestive enzymes. I think that is a very good idea, especially if you are saying that foods don't agree with you.
Going back to probiotics, same thing happened to me I took probiotics from a health store for many years, and didn't notice any difference.
When I started to see a difference is when I took megasporebiotic soil probiotic. I like those for a different reason too. Some probiotics increase histhamine levels, but not the soil probiotics. Plus they are so versatile nothing kills them, meaning that they make it to the small intestines. Many probiotics are killed by the stomach acid.
I got the idea about this type of probiotics from izabella wentz I was telling you about. You can search izabella wentz best probiotics for Hashimoto's. She gives suggestions about a couple of them.
If you have this digestive problems from my own experience, and from what I red a good probiotic may help.
And digestive enzymes if you see that taking one doesn't help you can take two.
Ah, this is very interesting. I’ve just read about this since reading your post, I guess the standard probiotics I was taking were probably having the opposite effect. I will certainly look into these, it looks like finding a reasonably priced soil based pro biotic in the UK is challenging... I shall keep looking.
Many of us take a tablet before or during meals as it is common for us to get digestive problems - due to everything slowing down with hypo. This is a link. I myself take one digestive enzyme with food especially if contains protein which is more difficult to digest. I buy mine through Amazon and by using TUK's Amazon link who gets a very small donation which helps defray the office expenses of Thyroiduk.
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