Hi everyone, I was diagnosed with Hashimoto's a couple of weeks ago. The first blood test showed TSH - 19.30 / T4 - 9.4. No vitamin test was done, just regular bloods and TFT.
I am 36 years old male with BMI around 30-31 so my GP put me on 100mcg Levothyroxine (Boots-Accord kind). I should mention that I always had a bit of anxiety and sometimes low mood, but lately I was feeling fine. After taking levo first several days were great, I felt more energetic and happier. About 4 days in I started getting some ringing in my right ear that would go away in minutes and then last Sunday it started ringing and has not stopped since, it's not too bad, but it is something that is causing me anxiety. So since Monday this week I've had so much anxiety that I don't know if I ever felt like that, on the verge of a panic attack some times during the day. Contacted my GP and she said that it all sounds like overmedication and she put me on 50mcg Levo now and even said that I maybe should be on 25mcg but went with 50mcg because of my weight. It is a bit better now but every day is a struggle and I feel like I don't know what's going on.
Sorry for the long text, getting to the point I decided that I need to see a private doctor. I need to take control and I need to understand more of what is going on, that usually helps me to deal with everything a lot better.
I was looking at the Thyroid UK private doctor list and was wondering if anyone could share their experience about Dr M Wetzler at WWHealthcare Ltd who is on the list? Please if you could pm me about that I would be very grateful. The price for consultation seems very good for my budget.
Also if anyone has a private doctor or endo recommendation in London or any other recommendations please comment below.
Thank you.
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Ondru
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Normally a post asking for a private endo would be locked to prevent information and discussion about doctors being public. In this case I won't lock the thread as I doubt you need an Endo.
If anyone does want to share an Endo's name please do this by private message only.
Firstly your GP has started you on a relatively high dose which can sometimes work, but not everyone tolerates a good dose in the first instance.
Its more usual for people to start on 50mcgs and then work their way up in 25mcg stages every 6-8 weeks following blood tests.
Particularly on lower doses people can sometimes feel a bit worse and new symptoms can develop that will go with longer time on Levo.
Due to being hypo we get low stomach acid which means we cannot absorb vitamins well from our food. Low vitamin levels give us further symptoms and also mean that we cannot use our thyroid hormone well.
We need OPTIMAL vitamin levels to be able to use our thyroid hormone.
Your next step would be to get blood tests run for ferritin, folate, b12 & D3. You can ask your GP to do this (find a cooperative one) or buy private blood tests. Once you have the results, post them here in a new post along with their range for each test (numbers in brackets after your result).
See link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost.thyroiduk.org/testing/priva...
There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
There is a lot to learn about helping yourself to feel well and what to expect. Just spending a little time here and reading what others are experiencing and replies to them will teach you an awful lot. Actually far more than you would get from seeing a private doctor.
The reason so many people turn to a group like this is due to doctors being pretty clueless generally as to how to make us well. This group is run by patients with lived experience under the name of Thyroid UK where you can also learn more. thyroiduk.org/
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
That is a lot of a very good information so thank you for taking the time to respond.
I did have thyroid antibodies at 195kU/L. I did hear about the gluten free diet and will start doing that.
Still interested in private doctor recommendations or experiences with the doctor I asked about in the post if anyone could pm me about that. I understand that it will not solve all of my problems and that there is a long road ahead.
Hi, just trying to understand how all of this works, maybe someone can help me.
So every morning I take the 50mcg levo and then eat in around 30-40 minutes because I was afraid to get anxiety, but every morning now after I get bad anxiety and it all goes down during the day and comes back in the evening. Is there any explanation for this or not really?
Thank you for the help and sorry if I’m a bit all over the place at the moment.
You should allow 1 hour after taking your Levo and eating or drinking anything containing caffeine. This is to allow time for your Levo to absorb properly.
50mcgs Levo is just a starter dose and no doubt you will have a lot of hypo symptoms, one of which is anxiety. Once you get to higher doses this should improve.
You should also be sure to supplement low vitamin levels to OPTIMAL to make your thyroid hormone work well.
I’m getting a blood test done privately tomorrow morning so will be interesting to see all the vitamin levels.
For the last few months my diet has been meat and mostly veg. Some red meat, a lot of chicken. Trying to loose some weight, so was counting calories and trying to stick to more simple home made food.
I’m not sure if my GP would do the test, I could do it privately. Could you explain more why a test is needed? Thanks
autoimmune disease much more common in females than males
coeliac
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
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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
No autoimmune disease in the family that we know of. My mum was tested for thyroid function very recently and it was all fine.
I would like to get the coeliac blood test. I found a variety of these online, but I'm not sure which one to get. Would you have advice about the best place to get one? Thank you.
I don't think I ever had glandular fever. Had tonsillitis in the begining of this year and covid last year. Mostly my health was always good, i get the flu once a year and really never had anything bad.
I asked my GP for a vitamin test and they said we might do one in 6 weeks, but most people with Hashimoto's are not vitamin deficient. So if I can do some things myself I will do that.
Thank you for finding the tests, will order the cheaper one.
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a week later add 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
Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 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
Thank you for this. How about the b12 shots are they worth it? Done somewhere privately. I do still have the ringing in ear and if there is a chance that it might be from the b12 I would like to try and get that sorted sooner rather than later.
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 after 8 days on 100mcg, 1 day off and 4 days on 50mcg, because I was having intense anxiety on the 100mcg so it was lowered. Will retest in 6 weeks.
Should I get b12 injection done privately? Just a bit worried about the ringing in ear and if that would help I would like to do it just not sure if places like Randox are worth it?
I’ve been having anxiety almost every day for the last week or so. Is this normal when starting on levo? Could it be a sign of too much or too little levo?
At the moment I’m taking the medication 30min to an hour before eating as recommended. Is there a better way to do it?
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
Vitamin D insufficiency was associated with AITD and HT, especially overt hypothyroidism. Low serum vitamin D levels were independently associated with high serum TSH levels.
The thyroid hormone status would play a role in the maintenance of vitamin D sufficiency, and its immunomodulatory role would influence the presence of autoimmune thyroid disease. The positive correlation between free T4 and vitamin D concentrations suggests that adequate levothyroxine replacement in HT would be an essential factor in maintaining vitamin D at sufficient levels.
Our results indicated that patients with hypothyroidism suffered from hypovitaminosis D with hypocalcaemia that is significantly associated with the degree and severity of the hypothyroidism. That encourages the advisability of vit D supplementation and recommends the screening for Vitamin D deficiency and serum calcium levels for all hypothyroid patients.
GP will often only prescribe to bring vitamin D levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol or even 80nmol
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