Me again. I’m so sorry for the long post, thank you so much if you get to the end. Advice from lovely people on this forum ~7 years ago was great and I can’t thank them enough. I pushed for my GP to investigate further and although she disagreed my B12 was poor (it scraped into the range when the GP tested) she gave both iron and loading doses of D3. I tested negative for coeliac disease and pernicious anaemia.
Since then I continued supplementing with Igennus super B-complex (2 tabs) and vitamin combo D3+K2 (2 tabs, each 4000IU D3 and 250mcg K2). I have tried some magnesium powder (mix as a drink) but it didn’t sit well in my stomach, maybe I just need to find one that suits me. All blood tests have been between 8:30am and 9am, 24 hours since levothyroxine,7 days with no biotin.
You can probably guess where this is going when you see my blood test results. I am currently living the nightmare of a decreased levothyroxine dose, and even though I am knackered I still have some energy to be pretty annoyed.
Originally in 2022 I reluctantly agreed on trying a decrease from 125mcg to 100mcg and 125mcg alternate days – my new TSH-obsessed GP wanted to decrease to 100mcg but I argued this was too far a drop. I agreed to this as I felt I had to try to work with her but after a week I started to feel like I was going downhill. I was patronised with how TSH is an indication of over medication. I tried to argue with no thyroid the delicate, fine-tuned feedback loop has been demolished, my T4 was not over range and anyway my cells use T3 but it was no use.
GP 24/08/2022 - taking 125mcg levothyroxine
TSH 0.04 mIU/L (0.27 - 4.2)
Free T4 16.7 pmol/L (11 - 22)
GP 16/01/2023 – alternate 125mcg/100mg
TSH 1.72 mIU/L (0.27 - 4.2)
Free T4 12.6 pmol/L (11 - 22)
I requested to go back to 125mcg which was agreed.
Therefore I am pretty annoyed that after my annual blood test this year it was demanded I decrease to 100mcg levothyroxine. Clearly no one had read my notes asking for this ‘experiment’ not to be repeated, and this time the demand came through a text message. No opportunity to discuss face to face, and my 25mcg tablets were removed from my repeat prescription.
GP 30/04/2024 - 125mcg
TSH 0.08 mIU/L (0.27 - 4.2)
Free T4 16.6 pmol/L (11 - 22)
GP 03/07/2024 - 100mcg
TSH 1.46 mIU/L (0.27 - 4.2)
Free T4 14 pmol/L (11 - 22)
(also indicated I am on the cusp of pre-diabetes)
Private 08/07/2024
TSH 1.02 mIU/L (0.27 - 4)
Free T4 15.5 pmol/L (12 - 22)
Free T3 3.4 pmol/L (3.1 - 6.8)
To say I am far from well would be an understatement. As expected, my joints ache, my eyes and skin are so dry to the point of being painful, the brain fog and exhaustion is dreadful. I usually fall asleep by 8pm, and I find it difficult to concentrate/remember things. My feet and ankles are swollen, and I’m now finding my arms feel the same when I bend my elbows. I’m sure my hands are puffy too. My tinnitus is a lot worse. I know you all know this so well.
Also part of my private blood test in July, clearly there is room for improvement:
Folate - Serum 24.5 ug/L (8.83 - 60.8)
Vitamin B12 48 nmol/L (37.5 - 150)
Vitamin D 80 nmol/L (50 - 200)
Ferritin 27 ug/L (13 - 150)
To be honest I’m not really sure even 125mcg was enough and I think I’ve just got used to accepting how I felt as the new normal. There’s been a lot going on in my life the last few years and although I feel awful physically, I now feel mentally stronger to look for improving my health again (if that makes sense!).
Any advice welcome as to what I should tell/ask my GP next – push for a referral for T3? I get this will probably be unsuccessful. Increase my vitamin supplementation again to see if I can bring them up a bit more? I have an appointment booked with the GP on Friday for reinstatement of my 125mcg at the very least.
Thanks for getting to the end.
Liz.x
Written by
kahlan
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Your vitamins and minerals are all low. My iron was a shocker two years ago. I’m under an NHS haematology consultant for iron deficiency anaemia and when ferritin goes as low as 30 I get an iron infusion.
So sorry you’re having a terrible time with NHS GPs. I had to go private for thyroid meds cos I got sick of being offered antidepressants for my cluster of thyroid symptoms.
That private test in July shows your T4 @ 35% and T3 just 8% and as you would expect with those numbers your vitamins are low.You have all the classic symptoms of hypo aching joints and fatigue etc.The brain fog for me was the worst.You may need T3 down the line but maybe a trial of increase in levo first?You first need to get back up to 125mcg daily for couple of months,that along with getting your vitamins up might see improvement.As you know you are in for a fight.Go prepared,make a list of all your symptoms and even take those private results along.Personally I wouldn’t be leaving the surgery without first being reinstated back to 125mcg.Don’t let them fob you off with antidepressants or painkillers.
Thank you. I am determined to get my 125mcg dose reinstated, and I definitely do not want any antidepressants. Thanks for reminding me they might try that one.
Thank you SlowDragon. I am not a vegetarian or vegan. I don't really eat much red meat but primarily chicken and some fish, eggs and chickpeas. I have beef occasionally, but I do not like lamb at all and pork does not agree with me. From your other reply I will add in some extra B12, so thanks for the links.
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.
Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:
Females 18 ≤ age < 40. 30 to 180
Females 40 ≤ age < 50. 30 to 207
Females 50 ≤ age < 60. 30 to 264l
Females Age ≥ 60. 30 to 332
Males 18 ≤ age < 40 30 to 442
Males Age ≥ 40 30 to 518
The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement as well as a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few 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) and continue separate B12
Post discussing how biotin can affect test results
write the practice manager a letter complaining about how you have been treated. Share your blood test results showing your T4 and T3 were not over range- point out that the latest best guidance advises against GP’s dosing by TSH and ask why the Gp in question does not know that? Do they perhaps need an up date on their training? Tell the practice manager you do not agree to a reduction in your dose and will continue to take your usual dose of 125mcg by cutting tablets from your (I assume) 50mcg tablets as you cannot get sick again. Because of this you will run out of medication sooner and will therefore expect the 25mcg tablet to be added back to your prescription when you require it next. This has been tried previously and it did not work. Why did they reduce your dose without consulting you? is that best practice or is it actually best practice to consult with patients? You expect as reply from the practice manager within 2 days confirming your 25mcg tablet will be added back to your prescription. I bet they will take the path of least resistance and do as they are told. You could also mention that you categorically refuse to see that GP in the future due to poor patient care you has received if you think it’s worth it. If they don’t do as they are told leave the practice and register with a new one. But I suspect they will do as they are told if you lay it out in black and white and ask the letter to kept in your record. Dint worry about coming across as snarky - we have to sometimes be extremely firm to be heard. I have several of these letters on my record lol!
Thank you for the encouragement to complain. I am contemplating a letter as this is the second time they have insisted on reducing my dose when I was sort-of doing ok(ish). Unfortunately I live in a rural area and have no choice on a different surgery. I would like to work with my GP as we should want the same thing - for me to feel better! Hopefully I get some answers on Friday..
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.
Post discussing just how long it can take to raise low ferritin
I will ask the GP for a full iron panel, and will have a look at the links. I've just watched the video and it was really interesting. Thank you again.
I'm so sorry kahlan. One thing I've learned from being hyper since 2014 and with 2 sisters who are hypo, is that only you know what dose makes you feel normal. Many hypo patients need T4 at high end of normal range to function well. Last summer I was over-medicated with carbimazole for hyper as bloods abnormal. I soon became hypo for the first, and I hope only time. The lack of any energy was horrendous. I have a GP who listens and is happy to liaise with endo and me and I have found the dose that keeps me feeling well even though my TSH and T4 are at the low end of normal. You must find a GP who respects you and your ability to know your body. Being told/forced (by changing prescription) to accept a med dose that leaves you struggling is totally unacceptable. You write as someone articulate and well-informed as well as self-aware. Be strong and assertive. This is your life. Thyroid disorders are complex and GPs are generalists, not experts. Good luck and hugs xxx
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