Hi all. I’m new to this group and would love feedback from people with similar experiences.
My TSH level has been slightly raised since 2012 (5.0) and had been experiencing fatigue and sleep issues but my doctor said I didn’t need hormone treatment. I immigrated in 2017 and obviously stress and age had increased and the symptoms had gradually gotten worse. In 2020 I had tests again and my TSH was 8.5. Symptoms had increased to brain fog, visual issues, joint and muscle pain, worse sleep, chronic constipation, irritability, low mood , The most interesting symptom was inflammation from alcohol or sugar or gluten. My GP eventually decided to treat but he said it was not really high enough based on the numbers??? I was started on 25mcg Levothyroxine and had it for a year with no change to symptoms. I’m now on slightly higher of 2 tablets every 3 days. My numbers are now TSH 7.5 Free T4 of 13 ( just above lower level of 12) and I’m positive for antibodies. I requested these tests, my GP never asked for them. I am now going to see an endocrinologist and hoping that he/she will go into more detail. How do these numbers sound? Are they bad enough to experience symptoms like these and should they resolve if I can get them down with the right dose? Has anyone had a similar experience? Would really appreciate your feedback.
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Yeti74
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Your numbers sound terrible. I don't know what your GP has been thinking but they're not even trying to treat your thyroid. No wonder you are symptomatic!
25mcgs is just a starter dose. Usually you would take that and then retest in 6-8 weeks and adjust the dose upwards in 25mcg increments until your TSH is around 1.
The aim of thyroid treatment is to reduce your TSH to around 1, possibly under 1 is where people usually feel well. Your symptoms should be taken into concideration but they rarely are sadly.
When we are hypo we suffer from low stomach acid and this means we dont absorb vitamins well from our food, even with the best diet. Can you ask your GP or Endo to test ferritin, folate, B12 & D3?
Have you ever had your antibodies tested? These show if your condition is autoimmune or not.
Thank you Jaydee1507, your reply is refreshing as I have been trying to solve this problem on my own. I have attached my numbers so you can see the antibodies. A doctor friend said this means the antibodies are positive. As I said my TSH was 7.5. How does the autoimmune condition then affect this?
It might be a good idea to see a different GP at the same practice. One who is willing to manage you more actively and not be neglectful! They haven't even normalised your TSH which is really bad. Referral to an Endo is usually after getting much closer to optimally replaced.
I missed your positive antibodies comment sorry. So that means you have Hashimoto's disease, an autoimmune condition where your thyroid is slowly destroyed. You've noticed sensitivity to gluten and others already, dairy is another thing people with Hashi's find issues with so might be worth trialling eliminating that.
I'm trying to understand your current dose. Is that 25mcgs a day plus 25mcgs every 3 days?
Approx how much do you weigh? Can work out a very estimated final dose based on weight in kilos.
Your symptoms will get a lot better once you get closer to your final dose. You do need to also pay attention to your vitamin levels as low levels mean we can't use our thyroid hormone properly.
Unfortunately we get people who have been neglected like you too often,so other people will be able to identify. You are going to have to arm yourself with a bit of knowledge and drag your GP along to get you well.
If I were you I would be pretty irritated with this GP but you do need to keep them on your side. Make an appointment and insist on immediately going to 50mcgs a day and book a blood test for 6 weeks time at 9am or as close as possible to that as you can. Don't wait for the Endo appointment.
A ball park figure for your final dose is 192mcgs so you have a long way to go with 25mcg increases every 6-8 weeks.
Also get the vitamin tests done before seeing Endo. Ferritin, folate, B12 & D3.
will get them to test ferritin, folate, B12 and D3. Anything else that might be helpful getting checked while I am at it? Inflammation is probably the worst symptom. It causes the brain fog and yucky flu feeling
If you've already stopped consuming gluten then not worth testing for Coeliac.
Remove dairy from your diet and try eating as many whole foods as possible as opposed to processed foods. That can make a real difference to how you feel while your on low doses of Levo.
Standard STARTER dose levothyroxine is 50mcg every day
Bloods should be retested 6-8 weeks after each dose increase in levothyroxine
ALWAYS test thyroid levels early morning and last dose levothyroxine 24 hours before test
Levothyroxine is replacement thyroid hormone. The aim is to increase the dose slowly upwards in 25mcg steps (retesting bloods 6-8 weeks after each increase) …..until TSH is ALWAYS below 2
Most important results are Ft3 followed by Ft4
Aiming for Ft3 at least 50-60% through range minimum and usually on just levothyroxine Ft4 will be a bit higher at 70-80% through range
Guidelines on eventual replacement dose levothyroxine by weight is approximately 1.6mcg per kilo per day. So in a bloke that’s almost always at least 100mcg levothyroxine per day
You need vitamin D, folate, B12 and ferritin levels tested now
As been left extremely hypothyroid you’re likely to have very low vitamin levels as direct result
Strongly recommend getting FULL thyroid and vitamin testing done BEFORE consultation with endocrinologist
Thank you so so much for your reply. Really informative. Interesting that 1.6mcg per kilo number. According to that I should be on 180mcg per day. Only on 2/10th s of that at the moment. So that makes me feel a whole lot better knowing I haven’t really even started treating it properly!
Having been grossly inadequately treated for years you will have to increase dose levothyroxine SLOWLY
Highly likely vitamin levels are terrible too
Hashimoto’s/hypothyroidism is not a rare disease (approximately 2 million people in U.K. on levothyroxine) ….but it’s rarely understood or treated correctly
You case worse than many……and we see a LOT of terrible treatment of thyroid patients on here….
yeah I get the slowly bit! I’m glad to hear that you guys think my results are terrible because the numbers are a medical fact and not in my head! The symptoms frustrate me and prevent me from being the best version of me!
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
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.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A 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 may slowly lower TPO antibodies
GP should have done coeliac blood test when Hashimoto’s was diagnosed ….did they?
if not …
While still eating high gluten diet ask GP or endocrinologist for coeliac blood test
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.
Hashimoto’s and leaky gut often occur together
Both dairy and gluten are considered inflammatory foods
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
Even if we frequently start on 50mcg (rather than on start on full replacement dose), most people then need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) over first 12-18 months until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
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.
Comprehensive list of references for needing LOW TSH on levothyroxine
I think the problem is here in NZ tge doctors I have spoken to seem to believe that the upper level is a TSH of 4 and only treat it aggressively if it is up around the 10 mark. So even I don’t know what the “normal “ range is?? What is the normal TSH range in the UK? Also must add that all the tests I have done have only been TSH tests. That’s what the doctors check. I personally requested antibodies and Free T4 on the last test because I had spoken to a doctor friend who said a Thyroid function test must include at least those as well. That of course opened up my eyes to a whole new way of looking at this.
Hi Slowdragon. Re range. My latest TFTs from GP show the upper end of TSH range has increased (same lab). I wonder why? No reason given when I asked. They'll be able to say 'normal" now to more people I assume, so I'm suspicious.
It "shouldn't" mean less people are diagnosed hypo .. when the lab [95% population reference range] changes the 'result' changes too .. Results are related to the test platform (machine) used . Each manufacturer makes a machine with a slightly different range ( due to the technical differences in testing method used ) that 'factory setting' range is then altered slightly once a lab buys that machine , to align closely with local 95% population samples .
edited* These local % samples may be updated frequently, or 'once in a blue moon' , there doesn't appear to be a fixed timescale for doing this.
When a lab get a new machine it looks like they make comparisons of existing blood samples from old to new machine and tweak the new machine range so the results align as closely as possible , and then there is some involvement with with the local endocrinology depts ( which is the bit that makes us all a bit suspicious)
A change in lab range from the same lab may mean either, a) the lab has bought a new machine .. or ..b) they have updated their local 95% population samples ... or c) there are some more dubious goings on involving converstions with endocrinologists .. is extremely difficult to find out for sure
These posts have more explanations on why lab ranges are so different and change so often.
Yes thanks for that. I understand about different machines etc. I have various other blood tests at different hospitals etc and this is often a feature of the results. It's just in this case it's the same GP practice changing ranges unless they've changed labs used?
the same lab could have recently bought a new test machine .. or updated it's local 95% population samples .. have you tried getting in touch with the lab itself to ask why... the answer would be interesting to know .
out of curiosity .... what was the old range and what ha it changed to
The graph with the median TSH is very helpful!! So it appears it is simply that my GP is somewhat reluctant to treat with the meds based on the fact that I am “slightly “ on the high side?
I can't understand why your GP hasn't tested T3 to get a complete picture. I may be slightly unusual but my TSH is something like 0.005 but my T3 is highish within normal range. If my GP had not tested T3 she might have assumed I was overdosed with levothyroxine.
I have no idea but here the doctors only tested my TSH and were reluctant to start Levo until I reached over 7. I have been suffering with these horrible flu symptoms not knowing what’s wrong with me yet it seems like it was the thyroid all along??
just picking up on your comment about sugar and alcohol, have you tried cutting out sugar and yeast? It’s very difficult to do but I had an overgrowth of Candida in my gut about 5 years ago and it’s insane how much better I felt after 7 weeks on the Candida diet! Also took some probiotics in tablet form to help my gut! I saw a biochemist near Gatwick who picked it up along with some other things and the improvement overall was amazing! Sorry not thyroid specific but every little helps
Hi. Yes I agree with others that really you need a holistic picture of what is affecting your health. It's taken me years to work out my food intolerances and sensitivities as unlike allergies the effects can take a while to show which makes it hard to work out what has caused if. I also have antibodies and I'm hypothyroid which can often be linked to other issues with the immune system so it may be a good idea to do your own personal research into your vitamin levels and diet etc alongside treating your thyroid problem. They are all interlinked. Thyroxin alone isn't usually enough to keep us well and it takes a while to sort it all out. Good luck.
Yeti ,,, yes it perfectly possible that you feel lousy due to those results.
I was diagnosed and treated based on results that were less bad than yours are now ~
TSH 5.7 , then 6.8 ~i was then diagnosed and started on 50mcg levo . which went up to 100mcg then 150mcg over year and half (my T4 was still in range at diagnosis ) ~ i did also have extremely high TPOab which probably helped the GP take it seriously enough to treat when TSH was only 6.8 ~ if they had not been so astronomical i may have been fobbed off for few more years .
But the point is ,, i felt absolutely awful with those 'not too bad' TSH /T4 levels .. i was really struggling to keep up with manage kids/ work /home life.. i was zombie by 4 pm every day. i was wearing 4 layers indoors ~ in summer.. My face had gone lumpy around the nose and eyes ... i'd already had to move house due to the lack of energy ~ because i couldn't manage the workload of where i lived previously , but i'd had no difficulty with the workload before going hypo)
Thanks Tattybogle. That does make me feel better about the potential of getting the right level of treatment. Just for interest did you also feel brain fog? Also what was your TPOab score? Mine was 67. Is that high?
i can't remember if i had brain fog ... it was 20 yrs ago ... and i probably had brain fog. lol
i do remember it took an embarrassingly long time to form a sentence and.... then ...erm ... say .....it .. (and it would still have some words missing) .
TPOab 2499 [0-50] .. don't think GP believed it first time, so he did it again after i'd been on levo for a couple of months .......
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