Hi, I was diagnosed with hypothyroidism just over 5 months ago. After various issues with levothyroxine (mainly digestive/GI problems) I stopped for a brief time during which my TSH rocketed to 78. Now on 75mg levo since Oct 10 and last test (23 Oct) showed
Serum TSH level 4.04 mU/L [0.35 - 5.5]
Serum free T4 level 17.5 pmol/L [10.5 - 21.0]
Not quite there yet, but I assume than levels will have adjusted further by now, but am still suffering from exhaustion and brain fog - some days better than others but does not seem to be improving much. Any advice on when I can expect to feel better?
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Tobernemo
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Hi and thanks - I did start on 25 then gradually up to 75, but am reluctant to go higher as I understand dosage should relate to body weight; I am small (5ft) and weigh around 50kg so i think 75 is about right?
An initial target dose does relate to body weight (1.6 mcg per kg) but each person has different absorption so it's just a starting point. Your blood test was rather soon after the dose adjustment but I think you fT4 is still a little low. TSH can take a little while to settle after it has been very high. See how you are in a couple of weeks and then consider asking for an increase if you haven't improved.
It will take three to six months to recover reasonably well. Once you've been on a stable slightly higher dose for four weeks or so I would get just TSH, fT3, fT4 levels checked to see where you are.
Thanks - yes I am not due another blood test from my gp for at least 5 weeks, and have not been tested for t3. Feel worse steadily and particularly bad today so may well get private test as suggested here.
The dose by weight is an initial guide.......But if you have poor gut absorption (common hypothyroid issue) or especially if lactose intolerance you may need higher dose
Research article on Levothyroxine and malabsorption issues
These findings show that lactose intolerance significantly increased the need for oral T4 in hypothyroid patients.
Gluten intolerance is also very common problem, if you have autoimmune thyroid disease (usually diagnosed by high thyroid antibodies or by ultrasound scan of thyroid)
Bloods should be retested 6-8 weeks after each dose increase
Dose increased up in 25mcg steps until TSH is under 2 (many people will have TSH well under one when adequately treated)
Most important result is Ft3
The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is) ...important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Extremely important to regularly retest vitamin D, folate, ferritin and B12
Plus thyroid antibodies
Have you had vitamins and antibodies tested, if not request they are done at next test
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies. About 90% of primary hypothyroidism is caused by autoimmune thyroid disease
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Are you currently taking Teva?
Teva, Aristo and Glenmark are the only lactose free tablets
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).
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
Thanks so much for all this. Think I will opt for a private test as gp doesn’t offer t3 just to see where I am. Vitamins ok as of beginning of October. Tried Teva but terribly sick with it. Accord ok with lanzeprzole.
This had not occurred to me. After taking levothyroxine for a few weeks started having episodes of stomach pain/nausea/occasional vomiting. Asked pharmacist and gp if I could break from it to see if it was the levo causing the problems, and indeed the issues stopped when I ceased the drug. However, tsh rocketed and I went back on the Levo after about 3 weeks after taking ppi for a week on pharmacist advice. Have not had stomach problems since (except after taking teva once) BUT actually on reflection have felt much worse tiredness and weakness since taking the lanzeprazole. Have had stomach problems for years after bad gi infection, have had gallbladder removed and persistent ibs-like issues, and did read much about low stomach acid some time ago. Should have remembered that omeprazole and similar didn’t work then ! Am lactose intolerant (hence trying Teva) but not acute and can tolerate some lactose and do not have problems with lactose in other otc meds such as paracetamol. Am very tempted to stop the lanzeprazole and see how I get on, using other approaches to stomach issues. What would you advise? Currently take levo at bed time and ppi in the morning.
Perhaps you might be better on liquid levothyroxine. Likely to need to be prescribed via endocrinologist, rather than GP, as it’s relatively expensive.....but not as expensive as adding T3
Strictly gluten free diet helps many many people improve their gut issues
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 are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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
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.
Lactose intolerance often improves once on strictly gluten free diet for several months
Thanks - gluten-free certainly something to try. I have never had a noticeable problem so unlikely I have coeliac disease. I should have thought twice about the PPI as looked into the low stomach acid issue some years ago so should perhaps not have accepted it so readily. My age - 61 - would make low stomach acid likely. I have also changed the time I take the levo - as advised by the surgery pharmacist - to bedtime rather than morning which suits me better regarding timing and perhaps will positively affect my tolerance (seems ok on Accord).
I am sorry to see that you are finding things difficult and wondering and worrying about what to do next. I can only tell you that you need a lot of patience when you are diagnosed hypothyroid. The admin girls on here though, are your best friends and will tell you how to go forward. But it isn't like taking paracetamol for a head ache unfortunately
I was diagnosed over 20 years ago and drove myself and my family- as well as my GP - mad because the magic Levothyroxine didn't work overnight to say the least.
You need to get all of your thyroid hormones tested because it is highly likely that your body is not converting T4 to T3 as it should , which seems to be mainly my problem too.
T3 is the only active thyroid hormone that your body can use.
A lot of GP's won't test for it any more, but I have had 2 full thyroid tests this year by asking my GP for them. I also got my vitamins tested twice too, all on the NHS. So you have to ask for them. Though some GP's still won't give you the correct blood tests, 8n which case you may have to go private.
So I would get a notebook out and write down what SlowDragon is telling you about what tests you need and what supplements you need too.
Get a good sized A4 notebook, so you can keep everything together. A file index is something that I find useful too.
Tell the GP that you have joined Thyroid UK and that you are trying to learn more about hypothyroid and how to treat it, blood tests/ supplements etc etc.
I find it easier to write my requests down and take it to the surgery, for the Dr to read when he isn't up to his eyes with other patients, but I always keep a copy of what you are asking your Dr for.
Or you can send your request by email too, but save copies of everything requests/results/receipts for supplements or whatever else you have had to pay for to treat your hypothyroidism. You may never need them, but if you don't keep them, you won't have the option to use them at any time in the future.
That is the trouble with face to face appointments, I can forget what I have asked for, or what I wanted to say/ask, they don't call it brain fog for nothing unfortunately.
Be firm but polite.
Request the tests that you want done. And I told my GP why I wanted these specific tests done too and I told him that as I have been low thyroid for over 20 years, I now know that hypothyroid treatment is not as easy as just taking Levothyroxine each morning.
You won't need to go into that because you are only a few months in yet, but get started right now.
Tell him that if you can't get these tests done on the NHS then you will have to have them done privately.
Give him time to think about that, but you must keep a copy of anything you ask him for and be prepared to complain vociferously if he won't agree to your requests.
It isn't fair that we have to do this, but unfortunately you will be very lucky if you don't have to chivvy your GP along. They just don't get the correct trained in treating hypothyroidism properly, they get told to take a TSH blood test, give them Levo, 'Hey Presto' your patient is sorted!
I have got 2 complaints going on at the moment with GP's. But it is beginning to work for me now because they know I will not stop until they treat me properly.
I heard last night that my GP is finally willing to refer me to an endocrinologist of my choice. I sent him the name of the Endo and the NHS hospital where he works. Waiting to see any answer from him now.
I didn't want to do all this, but I let them do nothing for me for over 20 years and it is payback time for me now.
This is a lot to take in, if you want to PM me please do. If I can help in any way I will, but I am not as good at the medical side of things as the Admin girls are, I only started learning about a year ago!! LoL
Thank you so much. I realise it will be a long slog but have been feeling so awful for the last month that will probably go for a private test to see where I am for t3 etc. Have mainly dealt with the surgery pharmacist and only once with the gp who seemed rather dismissive regarding initial problems/side effects of levo. Will see what test indicates then may well go for private endocrinologist appointment for speed as need to work/function which I am barely doing at the moment. But grateful too for your advice re documenting details and progress.
Essential to test TSH, Ft4 and Ft3 together. All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Try to get your GP to do a full thyroid test first, don't go wasting £29 if your GP will get them done for you. And the vitamin test prices are 4 times that amount. Put the money into your piggyback for when he refuses to do NHS tests for you.
You will need a stash to keep you in decent quality supplements anyway believe me.
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