I have recently been diagnosed with hypothyroidism - accidentally! I'd had chest pains on and off for weeks, and since I am slim, my GP tested me to see if I was *hyper* thyroid... but it turned out the other way around! My numbers are not dramatic but I do have antibodies suggesting an auto-immune issue (I'll put numbers below).
I told the GP "oh but I'm doing fine and in good health", and they wrote to an endocrinologist who said to hold off meds and just test annually. But on reflection I do think I've lost a bit of sparkle/get-up-and-go over the last 9 months or so, and I definitely get tired days. My chest still feels not quite right, especially if I have to "put on a spurt" unexpectedly, but my resting heart rate is around 60 and I am quite fit, so that might be totally irrelevant.
So I am wondering:
>>Are there downsides to a 'wait and see' approach?
>>Could I be doing myself any lasting damage, however minor, while not being "euthyroid"? Are there downsides to medication? (I can't see any side effects on the internet, apart from the annoyance of taking it in the mornings and the fact it can be tricky to get the dose right).
>>And might I continue to get better now that I'm taking iodine (and selenium, D3, B12), or is there a limit to how much that will help?
I'm not asking for "medical advice" per se, just experience from the community as a starting point, and will of course discuss with my GP before making decisions. I don't know if anyone will see this really, but thank you so much in advance!!
[Numbers for anyone interested: On the first test, my TSH was high-ish (6.64), with lowish T4 (8). T3 was totally normal. Two months later they tested me for antibodies which were positive but not excessive (97) and TSH (this time within normal range at 3.24). Annoyingly they did not test for T4 the second time! In between the tests I had started making sure my vegan diet contained iodine, which it previously did not, and I think that might have helped my TSH levels improve. Both tests at 8:30 in the morning.]
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I too was diagnosed with a thyroid condition when being investigated for something else. In my case this was gastritis & I had lost weight & had other typically ‘hyper’ symptoms such as palpitations & tremor. However, I was actually hypothyroid with antibodies confirming Hashimotos.
In the UK there is often a ‘watch & see’ protocol with medics holding off prescribing Levothyroxine until TSH rises above 10. Can you let us know your T4 and T3 levels (with ranges in brackets- as laboratories can vary)?
I wouldn’t take an iodine supplements; not generally recommended in Hashimotos unless deficient.
I recommend you test folate, ferritin, Vit D and B12 as these are often low with Hashimotos (and iron levels are likely lower in vegan diets). I wouldn’t supplement before testing your levels. Many on the forum test privately using Medichecks or Blue Horizon.
Hi Buddy195 thank you for this. When they tested my T4 it was quite low - at 8 (for which their normal range is 12-22 pmol/l). I know my T3 was 100% perfectly normal but stupidly I didn't write down the number.
I get literally zero iodine from my diet so I'm just taking a supplement that will get me to the recommended daily amount, nothing more, but I will look into that and to other levels. Thanks again.
Better to ask the receptionist than the doctor himself. Doctors don't always like us knowing our results, even though we are legally entitled to them. So, ring the receptionist and ask for a print-out of your results, to be picked up at her conveninece.
TSH isn’t sufficient Information unfortunately but if the TSH is in range the lab doesn’t test FT4.
FT4 isn’t the only thyroid hormone. There’s a more powerful hormone FT3 (triiodothyronine) Which is converted from FT4. This is often the source of most symptoms. Unfortunately it’s not often tested & many use private tests to do a full test.
Optimal vitamin D, B12. Folate & ferritin will help with health & thyroid conversion. Have these been tested? Low levels are common with thyroid issues. (In range is accepted by GP optimal levels is not the same)
Labs ranges vary so please include the lab ranges so the results can be interpreted accurately.
Iodine is not always helpful unless deficient. Perhaps your vegan diet made iodine levels low. However excess iodine can worsen thyroid function.
As you have antibodies it’s inevitable levels will decline so delaying replacement hormone for annual testing is not best approach.
Thanks Purplenails! I haven't had D, B12. Folate & ferritin tested so I will look into this. I forgot to mention that my T3 was totally normal What you say about antibodies and so inevitability of decline is very helpful, this is just what I was wondering. Thank you again.
Normal just mean “in range” eg and result could fall anywhere within it. EG FT3 (3.8 - 6.0)
If it was 3.8 you would probably feel really unwell. 5.8 you’d feel very different. Both are “ok” for a doctor but ranges are what us healthy for the vast majority of the population. It’s not what’s necessarily optimal or healthy for you.
Best way to obtain results is online access to GP record (extremely useful as access to notes & letters included if full access set up). England is contractually mandated to provide online access (other areas vary) so worth asking if your practice offers online access. Request full online access including historical record.
If not available do not ask doctors for results (they don’t like patients knowing). Ask via practice reception. Before I had online access I would contact them and explain I would like a copy of blood test from xx date and say I will collect on eg “Wednesday ” give them 2 days or so to print.
Don’t accept verbal or hand scribbled notes insist on a printed copy with ranges (ranges vary between labs so essential)
We often say here that Fine/Normal/OK is an opinion and not a result. So important to know where in range our results fall.
Folate and Ferritin are good around mid-range - Active B12 around 75 '- Total B12 at 500+ and VitD around 100. Have a feeling your practice may be unwilling to do all the tests you need.
I'm just at the start of possibly getting diagnosed with a thyroid condition, currently getting tests done but it's taken a while to get this far.
The NHS Endocrinologist I'm seeing has advised me not to supplement with iodine, they said it would complicate things at this stage; I'm also a vegan and do have an identified iodine deficiency ( I did a 24 hour urine test.)
So I would check with your specialists first as with you having Hashimoto's I've read on the forum that it's not recommended to supplement with iodine!
This forum has many knowledgeable and experienced members and you will get good advice from them.
Thank you for this, and very best of luck to you for getting your own condition diagnosed and in balance. With iodine, I know I was getting literally none before (which can't be good), but I've only just learnt thanks to this forum that I need to be careful.
So good that you are seeing an NHS endocrinologist; unfortunately the endo that my GP wrote to did not want to see me and just said 'test annually'.
I'm similar to you, being a vegan for many years my iodine intake was almost zero. I'd neglected to realise how important iodine is and I feel annoyed at myself as my focus was always on my B12 levels and I had overlooked iodine.
My GP hasn't been helpful but I've managed to get this far with the knowledge and support of this forum 😊
Thanks. Yes, I had the just same experience too - I'm health conscious and had long been aware of the importance of B12, yet I had no idea about iodine until the thyroid results came back. It does make you wonder, there's so much messaging about "veganuary" and so on these days - yet I never see it mentioned! Best of luck.
Thanks very much for this. B12 I have been supplementing for about a year now, perhaps more. I will look into the link between chest pain and low iron, and get full vitamin testing done. I have had low iron in the past, and I am a keen runner so I believe that can slightly raise iron requirements. Thanks again.
In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
Click on "Read the list of available tests" and on page 3 of the pdf you'll see
Urine Iodine Test:
Specimen requirements: Urine
Cost: £71.00
Order Code: END25
Turnaround time: 5 - 10 days
Iodine is an essential trace element, vital for healthy thyroid function. Adequate levels are required to enable the production of T3 and T4 thyroid hormones, whilst also being required in other areas of health.
Deficiencies can lead to impaired heat and energy production, mental function and slow metabolism. Urine iodine is one of the best measures of iodine status. This test is not performed as a loading test, but can be used to establish existing levels or to monitor iodine supplementation.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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