Hi, i had hyperthyroidism in July 2019 and since then ahve been suffering with palpitations and shortness of breath. I also have fatigue, dark shadows under my eyes and joint pain though I suffer with chronic fatigue and fibromyalgia. I have been seeing an endocrinologist for a few years and they say that my symptoms are not hypothyroidism but suggested that I may feel better if I get my TSH down to below 1 - my thyroid test results have been up and down for years. I started levothyroxine 25mcgs in November 2022 and stopped in June 2023 - I had never taken it regularly as it caused my stomach to bloat and become very painful. My results in June were TSH 0.82 and T4 18.4 - Back in November 2022 TSH was 4.93 and T4 13.8. Neither my GP or endo tests for T3 (except in May 2023 when it was 4.6 pmol/L) or my vitamin levels - I am in the processing of trying to request these. For the last 2 months I am suffering severe hair loss. At the beginning of this week I got the heart palpitations back and they were so severe that I started back on the levo and it seems to have helped a little. In May I had the following test done:
I paid to see a private endo and he wouldnt say one way or another whether I was hypo - just that if the levo helped me feel better to keep taking it but I am concerned about my hair loss and whether I should be taking it or not. I would really appreciate any advice/insight! Thank you
EDITED BY ADMIN TO ADD THE FOLLOWING:
Sorry did not put ranges for results:
T3 4.6 (3.1 - 6.8)
Anti thyroid peroxidase ab <9 iu/mL (<34)
Plasma ACTH 16 ng/L (no range given)
Renin 11.12 uIU/mL (no range given)
Synacthen Basal Level after 30 mins 483 nmol/L (> 450)
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jenny876
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Sometimes symptoms you get on Levo are due to too low a dose, low vitamins, food intolerances and also the wrong brand of Levo. Some contain excipients like lactose and mannitol that cause intolerances.
Which brand of Levo have you been taking?
We really need to see a full set of thyroid results once you've been on a steady dose of Levo for 6-8 weeks. That means TSH, FT4 & FT3. Then its possible to assess exactly what Levo is doing for you.
The other thing that can make a huge difference is getting your key vitamins to OPTIMAL. For thyroid hormone to work well we need OPTIMAL vitamin levels, not just 'in range'. This usually means at least 50 - 75% of the range.
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...
There is also a new company offering walk in & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
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.
First step would be to check your Levo brand and get one that agrees with you better. Then get full thyroid & vitamin testing done privately if necessary.
Hi Jaydee1507 and thank you for your reply. I started off on Teva but gave me worse heart palpitations and all over body pain so tried Wockhardt and that is the brand I continued to take - it has lactose and maybe thats why it gave me stomach pain and bloating.
Its so hard to get to speak to my GP and they never test for B12 or D3 or T3 so Im thinking maybe if I order all the tests I need privately it would be better. I live in northern Ireland so not sure if there are any clinics I could go to.
Im vegetarian so am probably deficient in something. Ive been gluten free for a few years now but I do suffer with gastritis from taking pain medication. Are there any clinics you would recommend for home testing?
Hair loss is frequently low ferritin by the way. Even meat eaters get low iron/ferritin due to the low stomach acid hypo brings. As a vegetarian your B12 may well be very low also and D3 unless you supplement. Most people are low on D3 regardless of diet.
What dose are you on? Options for lactose free Levo are very limited but Aristo (brand name Vencamil) is available but currently only in 100mcg dose tablets. You can get your GP to write the brand you prefer in the first line of the prescription and then the pharmacy can only give you that brand. Many people find that different brands are not interchangeable.
Most of the private blood testing companies do finger prick blood tests so you don't need a clinic for a blood draw. You do need to follow the preparation prior to doing the test at home, carefully for best results and to get the blood flowing.
- Drink plenty of water both the night before and morning before doing the test.
- Have a shower or bath to get the blood flowing.
- Do some light exercise walking up and down the stairs or just doing windmills with your arms.
Test at 9am which gives highest TSH and fast that day before you test only drinking water.
If you don't want to do a finger prick sample I see Medichecks have several clinics in N Ireland if one might be convenient for you. There is an extra charge of £35. Otherwise you can use any of the companies listed in the Thyroid UK link in my first reply.
to confirm with certainty whether you need to take levo or not, you would have needed to test your thyroid bloods after you had been off the levo for at least 6 weeks.... before you restarted levo.
eg . how low fT4 had gone , how high TSH had gone , + symptoms .
as you started back on levo without testing fT4 / TSH first , it makes it hard to know for sure how hypothyroid you were.
you will need to wait 6 weeks before thyroid blood tests can tell you anything useful now . (because it takes TSH a long time to respond to changed in thyroid hormone level ).
The only way to find out how hypothyroid you had become without levo would be to stop taking levo again for 6 wks and then test TSH / fT4 and preferably fT3...... but since it was symptoms that led you to restart , and the levo seems to have improved them , stopping Levo again just to prove how bad it was doesn't seem like a good idea .
So you may as well continue now for 6 weeks and get tested then to see the effect of the 25mcg dose on TSH / fT4 to see if the dose needs adjusting from there.
Some people do get gut / other reactions to some brands of levothyroxine and not to others (probably because of the different brands being manufactured with different excipients /fillers ~ some are lactose free , some contain mannitol etc etc )
Is the brand you are currently taking the same as you were taking previously ? (when you had bloating symptoms)
if the bloating symptom returns this time , contact GP /endo to try prescribing a different brand of levothyroxine . (some GP's/ pharmacists will say 'they are all the same' but this is not the case : gov.uk/drug-safety-update/l... "Levothyroxine: new prescribing advice for patients who experience symptoms on switching between different levothyroxine products . If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient"
Hair loss is probably more likely to be symptom of hypothyroidism or changing thyroid hormone levels rather than an actual side effect of the levothyroxine itself.
Hi tattybogle, thank you for your reply. I only restarted the levo 2 days ago so have taken 2 tablets. Would you recommend I dont take anymore and get my thyroid tested in 6 weeks to see what the numbers are?
depends how confident you were in the diagnosis of hypothyroidism (before you started Levo last year)
20 questions , sorry more detail gives us a better idea of what is going on.
at first glance it does seem likely that you need to be on levo , with a history of hyper , and TSH of 4.93 .. this is a pretty clear sign that something is amiss , it is most common for healthy TSH to be around 1 .... anything over about 3 is looking a bit suspect for hypothyroidism developing .
did you have two TSH tests that were over range ? (4.93 looks like it might be over range but you'd have to check the actual range that came with that TSH test)
what was the fT4 range for that test ? (13 .8 would be lowish on some ranges, but quite high on others)
Hyperthyroidism quite often turns into hypothyroidism later on . so the fact that you previously had hyperthyroidism in 2019 does point to you maybe becoming hypo at some stage and needing levo .
Do you have your blood result from when you were hyper ? was it treated with carbimazole ? (anti-thyroid drugs to stop thyroid being able to make so much T4/T3 )
were you told the cause of your hyperthyroidism .. ? eg . did they test for the antibodies that cause Graves Disease ( Autoimmune Hyperthyroidism) these are called TRab /may be written as TSI
or was it mild enough to not need that ?
Sometimes autoimmune hypothyroidism starts with a 'relatively' mild / transient period of hyperthyroidism , and then goes on to hypothyroidism ... but your thyroid peroxidase antibodies are negative .. so there's no definite evidence there of an autoimmune cause for going hypo (however negative thyroid peroxidase antibodies are not proof that you don't have autoimmune hypothyroidism .. some people only have Thyroglobulin antibodies(TGab ) and a few people don't have any)
you said thyroid results have been up and down for years ,,, how many yrs / what were results ?
Hi, thank you for your detailed response - I dont mind the questions at all - makes a change from doctor asking no questions! My last Thyroid test was on 1st June - TSH was 0.82 and T4 18.4 sorry no ranges were provided.
I had hyperthyroidism May - September 2019 and took carbimazole 5mgs. At the start of May my TSH was 0.02 and T4 34.6 - at end of September TSH was 4.25 and T4 11.5 - doctor said this was fine so stopped carbimazole. There were no tests done at that time to find out the cause so I have no idea why. I have a list of my TSH and T4 from December 06, no ranges with them though, and they are up and down. I can type a list up tomorrow and post.
I last had my iron levels tested in 2019 and serum ferritin 16 (13 - 150) transferrin 2.51 (2-3.6) serum iron level 12.5 (10 - 30) and transferrin saturation 19.9 (<55). I have had anaemia in the past and took iron tablets for it.
My heart palpitations and shortness of breath started November 2019. I also get recurring rashes and flu viruses which I connect with chronic fatigue syndrome. Thanks in advance for reading all of this!
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