I’ve written in her a few times and had such helpful responses so here I go again, I’m sorry but my GPs seem a tad useless on the thyroid function stuff.
I had a TSH of 10.3 and within range but low FT4 so have been on a 50mg dose of Levo since start of sept.
Since then I’ve had headaches across my eyes and nose everyday. I developed intense itching which I am on antihistamine for. And generally feel awful with slight nauseousness. I also lost 11lbs in 2 months - but gave up alcohol, have felt rubbish and have been stressed as a result of feeling awful.
I’ve had my 8 week bloods back and my TSH is 2.6 (so much better although not perfect) but, despite being very comprehensive, they didn’t test FT4! I’m booked for complete blood panel with medichecks next week. Have have a neck ultrasound on Saturday as while I have no lumps my neck aches - self arranged.
They did re-check my ferritin - it’s always low but since being on Levo it has plummeted and is now 16.7 (4 weeks before it was 49 in a 13-150 normal range). I’m taking iron supplements, and only doing so at lunch having taken my Levo at 8am or earlier. I am on supplements for vitamin d, b complex, take omega and also bio-kult.
I can’t get an appointment with my dr until mid December and when I go I need to be armed with as much as possible. I’ve looked through the amazing sheet shared with the ingredients in tablets etc - I was on Teva and felt even worse, moved to accord by pharmacist - improvement but still affecting my quality of life.
What are people’s experiences with accessing non tablet Levo or alternative meds in the UK?
I don’t want to stop the treatment, I clearly need it. But I am really struggling with feeling this way - a way I didn’t feel (aside from tired and weight gain) before the Levo! I’ve even considered just stopping it.
Thanks
B x
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Bmco
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50mcg is only the standard starter dose levothyroxine
You will need several further increases in levothyroxine over coming months
Dose levothyroxine should be increased SLOWLY upwards in 25mcg steps. Bloods retested 6-8 weeks after each dose change or brand change in levothyroxine
Accord don’t make 25mcg tablets. So when increasing to 75mcg request higher number of 50mcg tablets and cut in half to get 25mcg
levothyroxine doesn’t top up failing thyroid, it replaces it.
This essential fact is often misunderstood by medics ….who frequently misguidedly only prescribe minimum levothyroxine to bring TSH blood test result within range
On levothyroxine we frequently will have TSH below one when adequately treated. Most important results are always Ft3 followed by Ft4
Looking for both at least 50-60% through range minimum
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
All four vitamins need to be at optimal levels
Low iron/ferritin extremely common when hypothyroid
You’re likely to need iron supplements 2 or 3 per day plus iron rich diet
Come back with new post once you get new results next week
Maybe you're reacting to one of the fillers. I tried 3 brands of Levo before settling on Accord. Maybe ask your pharmacy if you could try Mercury instead. There is liquid Levo which has far fewer fillers, often given to people who cant tolerate tablets. But its very pricey compared to standard Levo.
So you might have a battle to get it prescribed. Then there's NDT, but its rarely prescribed on NHS, you might have to go,private or self source. Or just T3 which has become a bit easier to get on NHS due to falling costs. But only an Endo can prescribe it, not a GP.
hi - so I’ve now had my ultrasound and advanced thyroid panel. The winner of the diagnosis test is - SlowDragon !
My ultrasound showed “imaging appearances in keeping with autoimmune thyroiditis / hashimotos’ and the consultant radiologist suggested endrocrine if a correlation with antibodies shows on bloods.
Which have come back as attached. And do show raised antibodies.
I did the tests as suggested (no levothyroxin for 25 or so hrs, 8.30 test, no b12/biotin).
Part of me wants to cry with relief that I can go to the dr and say “look, it’s not right” as I feel so rubbish all the time.
Now to get back onto the supplements and try and get an appointment sometime this century!
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
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Yes on the ferritin - I’m vegetarian and always run low unless I take a substantial supplement, usually ferrous fumerate. It was actually 16 2 weeks ago and I went back on the ferrous so it’s gone up reasonably in that time. Rediculously I eat so well to include iron rich foods - but only the pills help. I guess that is a little more explained now with this thyroid issue and difficulties absorbing.
I had a full blood panel a couple of weeks ago. The only thing flagged was my MCH. Looking into that it’s consistent with low b12 when there are no other markers. Will mention to dr.
Will now read through everything else too - thanks so much!
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's test positive for coeliac, but a further 80% find strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
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.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Netherlands (and Germany?) guidelines are for thyroid patients to always get same brand levothyroxine at each prescription
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
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