Hello lovely forum - I’ve been reading your posts for two weeks while I get used to sipping my morning hot water!
I finally got a diagnosis of Hashimoto’s in January. Can I ask for help in untangling the results below? The endocrinologist was lovely, but didn’t give me any explanations. Now I have a diagnosis, I’d like to do what I can lifestyle-wise as well as with medication to try to recover.
A bit of background that you can skip if you want to go straight to the test results:
I’m 56 and used to have lots of energy. I have been unwell for a few years and it has been getting worse. It started up about 6 years ago (c. 2018) and I put all the symptoms down to work stress and perimenopause. At that point it was mainly fatigue, poor sleeping, anxiety, occasional psoriasis, and (two!) frozen shoulders. IBS-C raised its horrible head again 5 years ago in 2019 and put paid to intermittent fasting and size 10 jeans (I also had it throughout my twenties but probably didn’t do myself any favours then with borderline eating issues). HRT for symptoms (progesterone, I think) played further havoc with my digestion and did nothing to help other symptoms, so I took it from 2020 to 2022, but then weaned myself off it. In 2021, I officially added depression into the mix, not helped by my dad’s end stage Alzheimers, and went on to 20mg Prozac. Amazingly that helped the IBS-C a bit and did level out my mood. I managed to stay working full time and am not sure I’d have managed to without it. From 2020 onwards the muscle and joint aches started to get worse. I’d hold on to the banisters and the wall to get downstairs in the morning and would waddle like a duck when I got off a sofa or chair. Muscle and joint pain started waking me frequently at night, particularly in my lower legs, feet, hips and hands. I tore my plantar plate under the toes of one foot, simply taking a step while walking to work. It hasn’t healed properly since and I have had to spend the last two years in Hokas as any other footwear is crippling. Since 2023 things have just got worse. Sleep is pitiful and if the legs or hip didn’t wake me 4 times a night the bloating and stomach distress would. I struggle to manage at work, memory, concentration and motivation is atrocious – and I put this all down to chronic sleep deprivation, but now wonder. From being a (slow, but cheery) half marathon runner 10 years ago, I have turned into a cabbage, with bad back, hip, knees and feet and spend much of my spare time in bed, where I no longer even concentrate well enough to read a decent book. Nearly a year ago (April 24), a GP finally sent me for a broad range of blood tests (looking for rheumatism markers I think), which returned a TSH of 5.3 and FT4 of 15.2. She advised retesting in a few months, which I did in December 24. This time TSH was 11.7 and Free t4 11.5. The GP tried to start me on 100mcgs of Levothyroxine immediately, but I do like to know just a bit about what is going on in my own body, so, I was lucky enough to be able to use my husbands BUPA to see an endocrinologist who has done more thorough tests and an ultrasound of my thyroid and confirmed Hashimoto’s. He would like me to take 50mcg of Levo until a next blood test at end of March, so that is what I am doing. He also recommended an OTC Vit D spray. He said everything else is fine. I’ve been on both for 2 weeks. I’ve also binned the gluten just in case that is behind the auto immune response (I did eat a lot of wheat). I asked the endocrinologist about gluten and he said there is no research evidence, but a lot of his patients tell him they feel better for binning it. It’s too early to tell if any of this is working, but I am hopeful I might get some of my bounce back for the first time in several years.
…Oh and, I’ve had an Oura ring since Sept to try to get a handle on my health. My HRV ranges from mid 20’s to high 30’s, but on the 15th day of Levo I woke up to notification of an HRV of 54. I’m afraid I ruined that later that day with some lovely red wine, but if Levothyroxine results in visibly better HRV, then I may well be a fan!
And how much vitamin D spray per day are you taking
Well done on finally getting diagnosed and for already taking the plunge into being GFree
When you get bloods retested in March test early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
Serum folate: 4.3 ng/ml (range >3.8)
Folate is low
Look at adding a daily vitamin B complex
one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need 2 per day and/or may need separate methyl folate couple times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
You are picking it all up and doing well, and your bloods are comprehensive and pretty good.
A few have a reaction to Levo T4 hormone - you seem OK - that's a positive.
Admins like slowdragon who share the knowledge of how they improved is simply amazing. You can read the bio's where people give experiences.
I found forum scary when I was diagnosed, 2 odd years ago, a lot of the 10 to 15 % of strugglers are on here ... most are a lot simpler/easier.
Fingers crossed for you that you breeze through it, but take comfort the community here will help.
I cannot take gluten, neither can my Mum who is also autoimmune underactive. You are AI too. As your body attacks the thyroid you can get splurges of hormone released that can swing things around which is a reason to go steady with dose increases.
It is so slow to get to correct dose and slow for your body to start repairing, I did get a lot better after a couple of months. Anything like high cholesterol of prediabetes will likely sort itself out once you dose builds up.
Don't over do it. You will be convalescing ...
Remembering back, I logged waking temperature, blood pressure and pulse and noted all the weird symptoms. My brain was foggy and I emailed it to myself with what steps I had to do next with the Doctor/ blood tests etc.
With NHS you would not get T3 blood test. Your levo/T4 gets converted to T3/liothyronine by various parts of your body. As things progress having a highish level of this is what the forum experience seems to be - as you will still be perhaps hashi swinging it will be a while before you can find if you convert well enough.
I don't and I take a small dose of T3 to top it up. I am well.
A comment about gluten free. Many people find gluten free helps even if they are not coeliac.
For me I was tested for food intolerances several years ago. I was told that my main intolerances are oats and wheat, but not gluten, however the oats/wheat combination means looking in the gluten free products. I do avoid 'gluten free oats' as my problem is the oats not the gluten.
Further down the list is alcohol (always knew I couldn't take much). Then there's chocolate - but I can have a little occasionally!
Several years later I found out that I'm also sensitive to potato which hadn't been tested for previously. This is awkward as there is so much potato starch where you don't expect to find it, so I'm forever reading food labels. Took me time to discover that it is in stock powder, but it's not in stock pots. Potato is in the nightshade family. I'm fine with sweet potato which is in a different botanical family.
You'll have to try different GF breads to find one that works for you.
Remember you can't go partially gluten free. Keep reading the labels. For example normal sausages are made with crust/crumb, but some brands are fine.
Good luck. Many of us have found that it's worth going gluten free.
Thank you, Anthea55. Would you recommend food intolerance testing then, and if so, how does one go about it? I’ve switched to GF oats and cereal flakes which would be no good at all if there are other sensitivities. And chocolate is my weakness, but I started to wonder if it was making me especially achey that night/next day.
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