I am fed up with my symptoms. I was diagnosed hypothyroid 8 years ago and I am getting little help from my endocrinologist.
I take 100mcg levothyroxine. My symptoms are depression, low concentration, fatigue, breathlessness, headaches, burning in feet.
I really am not sure what more I can do.
I’m sorry but I don’t have the results to hand.
I think my endocrinologist is dealing with all things thyroid. The GP has been keeping out of it.
I will call the endocrinologist this morning and try to get them.
Thank you.
Thank you. I am sure my endocrinologist said the results are euthyroid but I don’t feel like that.
I just want my symptoms to be taken seriously by those in the medical profession and at times I feel like it’s all in my head.
I’ll see what I can do.
Those results most certainly are not euthyroid. Your endo obviously doesn't know very much about thyroid and is taking it that anything within the range is euthyroid, which is certainly not the case. A euthyroid TSH would be around 1. Over 2 shows the thyroid is struggling. And 3 is hypo. At 2.9, you are verging on hypo, even though you are taking thyroid hormone replacement. Which is not good.
Besides, you're diagnosed hypo, and as such, you don't want euthyroid, you want optimal, which is not necessarily the same thing. A hypo usually needs her thyroid hormone levels higher than a euthyroid person. So, a TSH below 1 - or even suppressed - and the FT4/3 well over mid-range. Your FT3 is low - well below mid-range. And your FT4 just exactly mid-range. So, you are under-medicated - hence the continuing symptoms - and should have an increase of 25 mcg levo, and a retest in six weeks.
We won't be able to tell how well you convert until you get your TSH down to 1. 
I had it suggested by a previous GP in the past my conversion wasn’t good and t3 was a possible option for me.
But I just don’t know what to do and I’m being told so many different things by different specialists.
What were your results when that was suggested? At the moment you don't really have much T4 to convert. Could be that at the time the GP said that, your FT4 was higher, so the poor conversion was more visible.
So, why didn't he follow through with it, if that's what he thought?
I moved towns short notice so I couldn’t see this GP anymore.
Oh, that's a shame! And, now they're telling you you don't need T3? Well, maybe first step should be to get an increase in levo and see how it goes with that. It is difficult to get T3 prescribed, because of the cost.
I moved towns short notice because I lost my job due to not being able to remember any information and I moved out from my parents place to my boyfriend’s and so my boyfriend supported me financially until I got another job...probably sounds a pathetic reason.
Not at all pathetic, no. One does what one has to to survive. And, you couldn't retain any information because your T3 was so low. Just a shame you didn't get the T3 prescribed first.
So, have you brought up the subject of T3 with your new doctors?
I mentioned it once and they refused.
TSH 1.20 (0.2 - 4.2)
Free t4 19.3 (12 - 22)
Free t3 4.1 (3.1 - 6.8)
Oh, yes! The poor conversion is highly visible there! FT4 at 73% and FT3 only 27.03%. The two percentages should be closer together. Say, FT3 at, at least, 65%. How much levo were you taking at that time?
I think it was 175mcg. These numbers I can remember off the top of my head.
I’ve had that many raises and reductions I lose track and I haven’t been keeping a consistent record of them or the results.
Always a good idea to keep records. If you get a print-out of your results, always write on the back what you were taking and how you were feeling at the time. It can be invaluable in the future to have that information. I know I didn't do it right from the start, and regret it now.
OK, so time to think about the future, now, and get that increase in dose. As you've just seen, the rate of conversion becomes more obvious as your dose of levo rises. And, what you need now is concrete proof for your doctors that your conversion is poor.
Good Morning Foxii8,
Sorry to hear you are constantly feeling unwell.
I too feel horrid most days so I know how frustrating, depressing and draining it can be.
But I believe if you follow the advice given by the knowledgeable and helpful members on here...that you will soon have a good idea on how to feel better.
Don’t despair, people on here really do care about helping you.
Sally x
Sally thank you. Right now I feel so low and this is just getting me down. The results come back, they’re in range, but I have symptoms still and I feel so disbelieved at times.
I will see what I can get from this endocrinologist. If no luck then yes, I will find another one.
Thank you.
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists
Thank you, I’ll try to get something arranged with my current endocrinologist as a last ditch attempt. They were said to be very good so I want to give them another chance.
If nothing again then I will be looking to be referred elsewhere.
Thank you again.
Working on improving low vitamin levels
Optimal vitamin levels improves conversion
Getting levothyroxine dose increased until Ft4 is optimal (At least 70% through range)
Trying strictly gluten free diet (possibly dairy free too)
These steps need to be done first ..
But if Ft3 still remains too low ....then you may need the addition of small dose of T3 alongside levothyroxine
Your results suggest you are under treated
Ft4 is only 50% through range
Ft3 only 25% through range
Helpful calculator for working out percentage through range
So you need 25mcg dose increase in levothyroxine and extremely important to regularly retest vitamin levels
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Do you have Hashimoto’s?
Ask GP to test vitamin levels
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
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, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus ultra vitamin
medichecks.com/products/thy...
Medichecks often have special offers, if order on Thursdays
Thriva Thyroid plus vitamins
Blue Horizon Thyroid Premium Gold includes vitamins
bluehorizonbloodtests.co.uk...
See/contact GP to get vitamins tested and dose increase in levothyroxine
guidelines by weight might help push for dose increase
Even if we often don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
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.
gp-update.co.uk/Latest-Upda...
BMJ also clear on dose required
bestpractice.bmj.com/topics...
Come back with new post once you get vitamin and antibodies results
i supplement vitamin D but no idea what dose to be on of that. Folic acid I’ve started a few weeks ago.
Thyroid peroxidase antibodies were 145 (< 34) measured by the NHS. So I take it this is Hashimoto’s?
Thank you.
Yes ....you have high antibodies this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's frequently 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 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
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
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
ncbi.nlm.nih.gov/pubmed/296...
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
ncbi.nlm.nih.gov/pubmed/300...
The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease
nuclmed.gr/wp/wp-content/up...
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
restartmed.com/hashimotos-g...
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.
I will aim to get tested for coeliac, I do get shocking digestive symptoms when eating gluten and these don’t appear until a few weeks later.
My vitamin D is 45, I don’t know the range. Just says vitamin D 45 on the letter. I take 800iu.
NHS guidelines- GP should prescribe 1600iu everyday for 6 months....
but easier just to buy your own a Vitamin D mouth spray...it works much better, especially with Hashimoto’s
Vitamin D
GP will often only prescribe to bring levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
But with Hashimoto’s improving to around 80nmol or 100nmol by self supplementing may be better
ncbi.nlm.nih.gov/pubmed/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly via vitamindtest.org.uk
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7
It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average
Suggest you increase to at least 2000iu...but you may need more
Plus get out in the sunshine
Government recommends everyone supplement October to April
gov.uk/government/news/phe-...
Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
Thank you, I have no idea why it’s so low. I go out in the sun when I can and I do eat foods high in vitamin D - tuna, eggs, not dairy because I get symptoms with that.
Anyone with autoimmune disease will almost always have low vitamin D
We frequently have genetic vitamin D polymorphisms...means we don’t make vitamin D very well...
Links about autoimmune thyroid disease and low vitamin D
Yet still most Hashimoto's patients struggle to get NHS to test vitamin D
All Patients with autoimmune thyroid disease should have vitamin D tested annually
ncbi.nlm.nih.gov/pubmed/286...
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.
endocrine-abstracts.org/ea/...
Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.
Poor gut function and low stomach acid when under medicated means nutrient absorption from food can be extremely poor.
Gluten intolerance and/or dairy intolerance extremely common
Thank you, I will print this off and show this to my GP to make sure I get the vitamin D checked properly.
Folate 2.28 (2.50 - 19.50) I had folic acid prescribed after this result.
Vitamin B12 263 (190 - 900)
B12 and folate are both low.
Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be more beneficial than just folic acid
chriskresser.com/folate-vs-...
B vitamins best taken in the morning after breakfast
Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day (or even half a tablet for first week) after breakfast.
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Low B12 symptoms
Ferritin 42 (15 - 150 premenopausal range, 30 - 400 postmenopausal range) I am 35 so premenopausal with fairly regular but heavy periods
Ferritin too low
Ask GP for full iron panel test for anaemia
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
Links about iron and ferritin
irondisorders.org/Websites/...
Helpful post about iron supplements and testing
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
8 years ! my goodness, so sorry to hear this. Change the endocrinologist, or go private initially to get to the bottom of things ! it is surprising what money can do !
Fed up of headaches!
Fed up with 5 minute appointments
Fed up!
New and fed up
Totally fed up
