Hi guys, looking for a decent endo as although I have zero symptoms of under active thyroid my doctor is referring me for Levo.
I took Levo for 18 months in 2018/19 and ended up with such bad palpitations, chest pains, legs swelling, weight gain, anxiety, brain fog and depression that my endo said if it was making me feel worse then to stop taking it. At peak I was up to 125 a day and felt like it was killing me. This was when my TSH was around 46 but my T4, FT4 and FT3 were in range. I haven’t taken it since and feel fine.
Fast forward to now, first bloods tested since 2019 and I got a completely panicked call last night from my GP. He gave me these readings over the phone and I’m getting the rest sent to me ASAP:
TSH 82
T4 7.7
FT3 3.3
Thus, looking for a good endo that can explain why I feel normal and prescribe the right drugs so that when I’m on them I don’t feel like they’re doing more harm than good.
I will post the other results as and when I get them.
Please be kind, I believe I’m a bit of an anomaly.
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Hypo73
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Did you get your vitamin levels to optimal when you were previously on Levo? Low vitamin levels can sometimes mean we don't tolerate thyroid hormone well.
Looking back at your previous posts it looks like you didnt get to an optimal level of Levo before you stopped? Being on too low a dose can mean you suffer more symptoms of being hypo as its not enough to replace what you need.
There are no different hormones that any Endo can prescribe that will make this easier unfortunately. AS long as you are on not enough Levo and your vitamin levels are low then you are likely to get symptoms.
Did you try different brands of Levo?
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
Hi Jaydee, thank you for your reply. I have been gluten free for about 10 years now, eat a mostly keto diet but with no supplements. I have had the vitamin and folate/ferritin tests done but not yet had the results, I will be chasing these on Monday. They have only given one other result so far to say my cholesterol is slightly raised and will need testing again in a year.
The issues I had with Levo were that the more I took, the worse I felt and when I started getting chest pains the endo said to stop taking it. I still have no symptoms at all of hypo. I supposedly got tested for hashi’s and the endo said there were no antibodies present.
I did try to ask for different brands of Levo but the GP said they are all the same, I know that’s not true but I was such a mess I gave up trying to argue with her.
I know I need to get this under control and very soon but I’m so scared of going back on Levo after last time, I can’t live like that again.
Even though you think you have no symptoms the long term 'silent' effects of being hypo shouldn't be ignored such as raised cholesterol and effects on the heart.
Some people really do suffer when starting Levo so you are not alone at all.
If you have a GP that isn't helpful then approach a different GP at the same practice. Lactose free brands are Aristo/Vencamil but its only available in 100mcgs, you could cut it with a pill cutter. Also Teva which is very marmite and some love it, others hate it.
There are also people that can't tolerate Levo and go T3 only but it would be a rare Endo that allowed you to do that.
Not everyone with Hashi's has antibodies. There is also a seronegative version, also antibodies do fluctuate so can be positive one test then not the next.
You can email info@thyroiduk.org for a list of Endocrinologists but I suspect you may be wasting money there.
When you have the vitamin results post them here for recommendations.
It's not uncommon for TSH tests to be interfered with by natural human antibodies. A combination of normal FT4/FT3 and high TSH does suggest the test may be interfered with. Ask for another TSH test to be done on a different version.
Hi Diogenes, it does seem extremely high for the others to be within range. I will wait until Monday and get the full results printed and hopefully get a call back with next steps. I have a feeling that a retest is imminent as I don’t think any endo is going to believe them.
Can you give the ranges for those results, please? Ranges vary from lab to lab, so we need the ranges used when by the lab that did your tests. You should find them in brackets, after the result.
Were those tests done in the UK? Because those ranges are really, really unusual for the UK.
It just occurred to me to wonder if your T4 and T3 results are for Total T4 and Total T3, rather than for Free T4 and Free T3.
Free T4 and Free T3 are the best tests for thyroid because they tell you the levels of the hormones in the body that the body can make use of immediately. Total T4 and Total T3 are not "active" hormone levels. The "Total" hormones have to be converted to "Free" hormones before the cells can use them.
At any one time the body has many, many times the amount of Total levels than Free levels.
I've just realised... It would help to decide if your results are Total or Free if you gave the units of measurement.
Actually, you can't predict what sort of effect biotin is going to have on results. It might not have any at all. But, it is possible that it can affect any blood test result and give a false high or a false low, and there's no way of knowing which it is.
Just for future reference, and may be irrelevant to you, but low iron and/or ferritin (iron stores) can cause palpitations and chest pain. I also develop anxiety and depression when my iron is low.
Low B12 and/or folate can also cause unpleasant heart and mood problems too.
Another thing to consider...
Some Levo products contain acacia and/or mannitol, and some people cannot tolerate either of those.
Did you keep records of the manufacturer of your Levo? Some people do well on one brand but not another. A common problematic brand in the UK is Teva - some people do well on this but also, lots of people hate it.
In the UK I think that all medicines are gluten-free. But not all medicines are lactose-free, which might be an issue for some people.
if your TSH is high but your t3 and t4 is in range, then taking levo is going to bring back the same symptoms you had before - you will just put in more t4 into your bloodstream. The high TSH is indicative of your hypothalamus detecting that you need to increase your thyroid hormone production. T3 and t4 are used by our cells to release energy. If your body is spending a high amount of calorific energy, more of your thyroid hormones are being used up. If your t4 and t3 are in range (difficult to tell from above numbers without a lab range) this indicates that your thyroid so far is keeping up with your body’s needs for thyroid hormones but it is working very hard, I.e. producing thyroid hormones at a very high pace as your body uses them up.
You can test this with an ultrasound, which will show the vascularisation of your thyroid and the the speed of the blood pumping through the gland as it takes the hormones away.
Key question is why your body is needing so much t3/t4. That’s a conversation to have with yourself and your doctor.
One was to help yourself is to reduce your calorific energy expenditure and to reduce stimulation of your thyroid from your sympathetic nervous system. TSH will come down as your body’s energy levels reduce.
What a fabulous answer! You have taught me something today so I thank you for that. I had looked into the hypothalamus and the pituitary gland but did not find anything on calorific expenditure. Do you know of any articles I could read to prepare for the doctor on Monday please?
I’m sorry to be a cynic, as I have been so see many endoctrinologist, but they are unlikely to help you. The way your situation will be treated by an endoctrinologist is unlikely to be differ very much from your GP. There is one ‘treatment’ which is levothyroxine, which you will either be prescribed or you won’t.
Fantastic article, I totally agree with your cynicism and am trying to arm myself with as much information as possible so that I can have a valuable conversation with the endo as and when I get an appointment.
the article doesn’t cover the role of the nervous system though. The thyroid is the most richly innervated gland in the whole body, it is very sensitive to stimulation from the nervous system. This is not something that forms part of any formal treatment protocol from the mainstream endoctrinologists though. If you ask them about whether the nervous system impacts the work of the endocrine system, they’ll tell you it’s med-school 101, but for some reason this is entirely ignored when actually treating patients with endocrine issues.
Word of warning about being an ‘anomaly’. In my experience if these ‘run of the mill’ doctors cannot get their heads around it, or are too damn lazy to take it seriously, you could find yourself without support. In an ideal world they should be intrigued by your situation - and I am amazed and pleased for you that you appear to have no symptoms - but you must do what you can to get to the bottom of this. diogenes gives you an important first stop - get retested, preferably by a different lab. There are other possible scenarios for your results but I am definitely not an expert. I would urge you to get retested privately.
I totally agree with you and I’m going to wait for an appt as I truly think the first thing they will do is retest. If they come back the same I’m going to get private ones done for sure! I can’t believe it’s that high with no symptoms.
But it's not the TSH that causes symptoms, whether it's high or low. It's T3 that causes hypo symptoms when it's too low and hyper symptoms when it's too high. Your T3 looks ok, so that's why you have no symptoms.
That high TSH just has to be an anomalie, and I agree with others, you need retesting in a different lab that uses a different testing method.
Thank you, I really appreciate yours and everyone’s advice and will be getting retested ASAP. I’m just waiting on the antibodies test before I get the full write up printed for me.
"I’ve been totally off of Levo for 10 weeks as per endo instructions...
TSH: 23.8
T4: 11.4
T3: 3.3
Considering that I was up to 100mcg in June as my TSH was still soooooo high (36.5 on 75mcg) I am not really sure what to make of this at all!
I’ve had more bloods taken today and they are being tested at two different sites to see if there is “interference” in my TSH which is why it reads high."
Were you told the outcome of this investigation ?
with no symptoms and T4 /T3 levels that appear to be consistently fine, and the TSH remaining so high while on levo .. i would be highly suspicious that your TSH tests are suffering from interference.
I never got the results from the two tests to look at but was told they were exactly the same and it was still too high.
I read the article you linked and I understood most of it, very interesting so thank you for that. I’ll let everyone know on Monday what “they” are planning to do but for now as I feel fit and healthy I’m going to keep researching to find out if they can check other things like my pituitary and my hypothalamus. Here’s hoping I get a good, inquisitive endo!
"Ah Yes" ( David Bellamy voiceover) .. "here we have the Lesser Spotted Inquisitive Endocrhinoceros ... these wonderful creatures are so rare they are now endangered .... their habitat is threatened due to invasion of a more dominant species, the One Eyed TShoceros .... "
Not sure who will see this (hoping everyone who has responded thus far) but I just got turned down by my healthcare for treatment and now have to wait for the NHS to get in touch.
I did however get my TPOab results, they are at 428. I am now thinking that my endo never did the test or lied to me that I didn’t have any issues with antibodies. Question: do any of the private tests cover the other antibody tests to ID if this could Hashimotos or Graves?
TPOab of 400 is a clear positive showing autoimmune thyroid disease of some sort.
However TPOab can't tell you whether it's Hashimoto's or Graves., because Graves very often has raised TPOab too ...... it's most likely Hashimoto's in your case though because :
a) 400 is pretty high , and in Grave's, the TPOab are not usually particularly high , and
b) you are obviously NOT hyperthyroid.. your fT4 / fT3 are not high, and your TSH is not supressed ... so you clearly don't have active Graves Disease causing any hyperthyroidism at the moment .
The following thought is a long shot , and probably still would not explain your issues , because you do not appear to be significantly HYPOthyroid either (your T4 / T3 appear fine. it's just the TSH that is suspiciously whacky ) .
But since the TSH is so unusually high and lacking any getter ideas's, it might just be worth trying to get an NHS Endo to test
these are the ones usually used to confirm Graves disease .. however ..there are actually two sorts of TRab .. a 'stimulating' form which causes hyperthyroidism (Graves), and a 'blocking' form which actually causes hypothyroidism.
This blocking ones can cause an unusually high TSH level with the hypothyroidism .
The TRab test measures both stimulating/ blocking antibodies together and can't separate them , but if TRab result is high in someone who is NOT HYPERthyroid , then it can be deduced that they have some the blocking ones .
(To test just the 'stimulating' ones (in isolation from the blocking ones) , you would need to get Endo to do a TSI test (Thyroid Stimulating Immunoglobulin) .. but its highly unlikely you have significant amounts of those , as they would cause very highT4 / very high T3 / and very low TSH)
Not sure whether it will help or just confuse , but in case you are curious...The Spectrum of Thyroid Autoimmunity : thyroidpatients.ca/2020/04/...
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Well, what are they going to treat? They obviously don't think you have Graves', or they would fall on you like a ton of bricks with anti-thyroid meds. And, there is no treatment for Hashi's. And your FT4 and FT3 are not saying that you need thyroid hormone replacment. So, apart from getting that TSH retested in a different lab - and possibly testing for TRAB antibodies - there's not much they can do.
Thank you GreyGoose, I guess I wait for the docs to get back to me. I may end up paying for private if it comes to it but really can’t afford it right now.
I’ll have my TSH tested by one of the labs privately for now though.
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