Hello, a random Q I would love some help with please. Officially diagnosed with Hashimotos in September by an endocrinologist, and now starting the process of increasing Levothyroxine dosage every 8 - 10 weeks with aim of TSH <2 (currently 4.1). Currently on 50mcg daily. My main symptoms have been high cholesterol, clammy sweats and hair loss.
For the past 2/ 3 weeks however I’ve had a non specific feeling of “coming down with something” - pain around left ear, sore throat, achy, fatigue. I now have swollen lymph nodes in my neck, and around my left ear and I am SO tired even on waking. My shoulders and neck ache, my fingers are swollen and I’m really feeling rather out of sorts and can’t be bothered with anything.
Could this be linked to Hashimotos please? I would be so thankful for any advice.
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Myfanwy2022
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Could be linked to low thyroid hormones - hypothyroidism - but could be that you're going down with some sort of bug. There's no way to tell for sure. But, with a TSH over 4 you're obviously under-medicated.
50 mcg is only a normal starting dose. When did you have your last increase?
I’ve been on 25mcg for 4years or so when sub clinical and no obvious symptoms and my TSH was consistently above 4 at that point. Endocrinologist only just started me on the 50mcg - for the next 8 weeks and then more bloods. Was on 37.5mcg initially after my first consultation as was having heart palpitations after increasing to 50mcg. He’s taking the increases slowly as a consequence.
Even just increasing Levo dose will cause a change in symptoms that will come and go as your healing progresses. 4 years is a long time to be on just 25mcgs so likely you have low vitamin levels also caused by the low stomach acid that comes with being hypo.
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/testing/priva...
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.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
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.
Do you do tests as per the protocol recommended here?
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
Not the Hashi's itself, but the resulting hypothyroidism could, yes. Anything and everything can be caused by low thyroid hormones, because every single cell in your body needs thyroid hormone to function correctly.
lots of interesting info here Jaydee thank you. As you say I am at the start of my healing journey and as a result can be a little thrown by the symptoms that seem to be occurring. This current fatigue, mood and glandular issue is feeling quite debilitating . Will this resolve once my Levo is increased?
I’m seeing a nutritionist for past 2 months - who has put me on gluten free diet, with regular bloods to check antibodies (>500 last test) and supplements to boost Vit D, selenium, zinc, magnesium. With phosphatidyl choline & D limonene to improve bile flow as she believes tied into high cholesterol. Oh and plant stenols as per endocrinologist.
Last test results as follows:
Ferritin 182
Folate 13.2
Vit D3 83
Vit B12 78
Sadly I don’t have the most supportive of GP’s so have had difficulty over- riding his autocratic approach re my symptomatic cholesterol levels ( STOP HRT immediately and take statins ) rather than focussing on the cause of the problem. I will definitely contact him re the one brand of Levothyroxine. Our dispensary at the surgery only provide the cheapest brand so I cannot guarantee what I’m getting ….
Taken on board the protocol re bloods and have followed that at last test - based on advice from this wonderful forum. Ive used Medichecks to date who have discouraged sending further bloods until 2nd January due to postal issues.
I take levothyroxine in am - should I avoid a cup of tea for an hour - endo only mentioned coffee??
Any food or drink except water for an hour after Levo, or if you prefer you could take it at bedtime or even during the night if you get up for the loo. There is some evidence Levo is better absorbed and utilised at night.
My only advice is to be sure replacement is what you need. Maybe the etiology of your thyroid issue is a nutritional deficiency . When you are figuring it out on your own it is trial and error . I am convinced doctors know less about the thyroid than they think and Levothyroxine is a chemical that is not harmless. I wish you luck. I really do.
Important to note that Levothyroxine is not a chemical nor is it a pharmaceutical. It is a hormone. T4 is molecularly identical in both natural thyroid hormone that your body makes and Synthroid (or any other brand of Levothyroxine.)
When we say we are “medicated” while taking levothyroxine, it’s not technically accurate. We are simply replacing a hormone our body can no longer make and that we need to live.
As OP was diagnosed with Hashimotos (ie, not just thyroiditis), OP has auto immune issues that need to be bolstered by - but not corrected by - optimal vitamins and minerals.
We all agree the medical establishment worldwide knows nothing about thyroid. Equally dangerous outcomes but in very different ways between the US and the UK.
Just want to make a correction if it is not made in the body it is a pharmaceutical. Its classification is a hormone which is made to be bio identical to what is made in the body . All I suggested is to be sure of the etiology of your symptoms. If you are then you are on the right treatment for you!
Hi Myfan, adding to excellent advice above, there have been comments on this forum periodically about getting sick while hypo.
I remember in my early diagnosis/treatment days I got hit with everything - every sniffle, every cold, ear ache, maybe flus and viruses … every little thing took weeks of careful and slow resting up to finally feel better.
Also, that first year on proper titration (especially when under-replaced for so long can be exactly as you describe… brutal at times! See image though for the path our healing takes and take comfort you are on your way.)
Now, I’m entering my third year of Levothyroxine treatment. The first year my doctor left me on 50 mcgs Levo. Felt awful, found this board and got on track with proper titration. I’m at 112 mcgs Levo and 10 t3 daily now.
A post like yours reminds me that this doesn’t happen to me anymore. Through optimal Free Ts and vitamins (ferritin, d3, b12 and folate) plus a focus on good sleep and diet and light daily activity, I don’t get sick at all. And of course the squiggly line of healing does raise up over time. It gets better but can take a year or so.
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