Hello,
How is it possible that after 8 weeks between one and another bloods test my TSH is 3.66 from being a a range of 2. I'm on 50mcg Levo. I was just prescribed to take one day 50mcg and one day 75mcg and my Endo has told me that TSH can go up sometimes even when taking Levo. I've only been on it for 3 months so I would expect it to get better rather than worse.
Mmmmmm. I think our instinct takes over when we're not progressing.
Your Endo's statement that sometimes TSH rises after starting levo, I find that incredible when it is supposed to be that the TSH reduces once we begin taking levothyroxine. TSH will only rise when our dose is too low.
No wonder a majority of our members 'do it ourselves' when they're still symptomatic.
Once diagnosed and given levothyroxine, usually 50mcg to begin with. Then after 6 weeks if TSH has remained higher or not reduced (even slightly) something isn't right.
Well 50mcg is only a starter dose
Dose is increased slowly upwards in 25mcg steps until TSH is ALWAYS under 2
Most people when adequately treated will have TSH well under one
Which brand of levothyroxine are you currently taking
Many people find different brands are not interchangeable
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
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 with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
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 all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
List of hypothyroid symptoms
thyroiduk.org/if-you-are-un...
Thank you for all this. I appreciate it. I don't know if you see my other questions but I posted on Friday with all the blood results just before i saw the Endo. He is really great and caring and I see him privately but he's also very disorganized. Perhaps if you can see my other post with all the results. I had the test done about 9 weeks after the last one and it was fine in the morning I wasn't taking any vitamins prior to that and I think I took my last levo at least 20h prior. The doctors didn't say anything about low Ferritin bit mentioned that I should take 1000 vit D and retest it in a month. But last time I spoke to him via email he was still waiting for vit B12 results and he didn't mention this on my Friday appointment and I forgot about it too. Firstly in march he didn't think it was Hashimotos because I was going through Subacute Thyroiditis and he was only meant to watch the hypo until it settles itself but on Friday he said that he thinks it is Hashimotos. I'm all confused as nothing is certain. I'm feeling better. I've been suffering for about 10 years with fatigue, muscle and joints pain, swelling of the feet and hands, hair loss and weight gain, constipation, mood swings, depressive thoughts, emotional numbness but none could figure it out and I started to think I'm a hypochondriac. Until last autumn I fell very ill with high fiber, lumps in my neck and extreme pain in neck, jaw and back of my head. They thought it was cancer but I refused the surgery and after forcing ent surgeon to proscribe me some steroids, after just few days the lumps and poziom sent away! But not I'm on under-active stage. Whether this will be permanent, I don't know. But reading about Hashimotos, all those issues I've had for all those years fit. Except that I don't think I have fought high antibodies. Note, after only free weeks on Levothyroxine, I feel much better, especially mood wise, hair loss of back to normal levels, less feet swelling.I'm taking the North Star Levothyroxine. Whatever the Lloyds pharmacy is selling.
Northstar 50mcg and 100mcg are Accord brand levothyroxine Also available boxed as Almus via Boots
But Accord don’t make 25mcg tablets
So BEWARE Northstar 25mcg is Teva brand
Best to avoid Teva as this upsets many many people
To take 75mcg per day, just get higher number of 50mcg tablets per month and cut in half to get 25mcg dose
Low vitamin D
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
GP will often only prescribe to bring vitamin D levels to 50nmol.Some areas will prescribe to bring levels to 75nmol or even 80nmol
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...
But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better
pubmed.ncbi.nlm.nih.gov/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 NHS private testing service
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
amazon.co.uk/BetterYou-Dlux...
It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average
Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol
grassrootshealth.net/projec...
Government recommends everyone supplement October to April
gov.uk/government/news/phe-...
Taking too much vitamin D is not a good idea
chriskresser.com/vitamin-d-...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
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...
2 good videos on magnesium
healthunlocked.com/thyroidu...
Vitamin D and Covid
Notice how much vitamin D many of these medics are taking
50 mcg is only a starter dose. Enough to suppress the activity of your thyroid, but not enough to replace all the hormone it was making. So, of course, the TSH rises to tell the thyroid to make more. Your thyroid can't respond adequately, so you need an increase in dose.
But, I think your endo is either being over-cautious, or knows nothing about thyroid, to give such a tiny increase. With a TSH over 3, you needed an increase of 25 mcg, because you are still hypo. With such tiny increases, your progress is going to be very slow.
He is given me an increase in 25mcg but ever other day. He said he didn't want to overwhelm me with every day increase so perhaps he is over cautious.
Results from Previous post
Ferritin 33.81 (13-150 ug/L)
Total Vit D 52 (76-250 nmol/L)
Thyroid Peroxidase antibody <4 (0-24 lU/mL)
Only TPO thyroid antibodies tested
Significant minority of people only have high TG antibodies. NHS refuses to test TG antibodies if TPO are negative. So would need to test privately
20% of autoimmune thyroid patients never have raised thyroid antibodies
Have you had thyroid ultrasound scan yet?
If not, request one
Vitamin D far too low
Are you now on vitamin D supplements
Ferritin also too low. Look at increasing iron rich foods in diet to help improve
Have you had B12 and folate results yet
Guidelines on dose levothyroxine by weight is to increase dose slowly upwards in 25mcg steps until on approx 1.6mcg levothyroxine per kilo of your weight. So unless extremely petite likely to need further increases in dose over coming months
Thank you. I had several scans due to the illness I was going through since last autumn. As soon as I turned 40, I fell extremely ill. It took months to get diagnosed which is ridiculous because after the first scan, radiographer had told me that I had giant cells and he didn't know what our was. It took me free minutes to Google this! On top of the other symptoms, everything was saying that this is Subacute Thyroiditis but my NHS Endo has requested urgent right thyroid removal in case it was cancer. She didn't ask about the symptoms. I had several nodules which were growing very fast and even FN biopsy didn't exclude cancer. However I read so much about it that I went privately and forced ENT doctor to give me some steroids which he did. After few days of ibuprofen, nodules almost were gone and then 5 days of steroids helped completely. Then the Subacute Thyroiditis has moved to the left thyroid which was even more painful but lasted less and prices that it was ST. So I had several scans post this. I should have another one in 4 months as my neck is feeling a little swollen again in the last 2-3 weeks. But my new Endo (seeing him privately) isn't worried about it too much. He said that the larger dose should help with this. He recommended to take vit D so I just went and bought the mouth spray and some magnesium. He didn't mention ferritin results but I bought some iron and I'm going to make some spinach juice-yum. I'll email the Endo tomorrow to remind him about vit B12 as well.
Never supplement iron unless full iron panel test shows low iron
You can have low ferritin and high iron. Iron is extremely toxic if you don’t need it
Spinach apparently doesn’t improve iron levels greygoose has info on that
Red meat and liver should help
Thank you for that. I'll email Endo tomorrow and have a word about that with him that's why I love this forum, for people like you which take time to help others. Thank you
Most endocrinologists are unaware of importance of GOOD vitamin levels
NHS only tests and treats deficiencies
If your results are within range….they won’t treat or consider it relevant
Low ferritin
Low iron and/or low ferritin frequently linked to hair loss
Heavy periods are classic sign of being hypothyroid and will lead to low iron and ferritin ask for full iron panel testing for Anaemia
Look at increasing iron rich foods in diet
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
List of iron rich foods
Links about iron and ferritin
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
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
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post discussing just how long it can take to raise low ferritin
healthunlocked.com/thyroidu...
Never supplement iron without doing full iron panel test for anaemia first
Posts discussing why important to do full iron panel test
at the peak of the ST infection in January;
TSH 1.37 mU/L (same as above) [0.35 -5.50 ?]
Free T4 13.4 pmol/L (same as above) [10.5 -21 ?]
Free T3 5.0 pmol/L (3.5-5.6 pmol/L)
Also TSI <0.10 iu/L (<0.56 iu/L) and TPA 38 iu/L (0-60 iu/L)
given 50mcg levo, felt better for a couple of weeks, then less good;
TSH and T4 results are from 21/04/21 after ? weeks on 50mcg.
TSH 2.77 mU/L (0.35-5.50 mU/L)
Free T4 14.9 pmol/L (10.5-21 pmol/L)
.......... The dose should really have been increased at this point, due to pituitary noticing 'not enough and sending out more TSH to ask for more thyroid hormone.
This is not unusual .. 50mcg s not intended to be a full replacement dose .. it is just done so that starting at 100mcg (ish) all at once does not put a strain on the body's systems.
Now ..
TSH 3.630 (0.27-4.20 mlU/L)
T4 16.86 (12-22 pmol/L)
T3 5.0 (3.1-6.8 pmol/L)
........Unsurprisingly, since pituitary did not get more thyroid hormone when it asked for it .. it is now asking louder, ie. is sending out more TSH then before.
"Endo has told me that TSH can go up sometimes even when taking Levo." yes, it can .. and it 's usually because more thyroid hormone is needed.
He has just increased dose to 50/75 ie. 62.5mcg.. which is still unlikely to be enough (expected replacement dose is usual;;y around 100/125mcg ish or 1.6mcg /Kg body weight) .. so basically you were left on 50mcg for too long , and have now been increase by 'not enough'.
meaning you feel ill for longer than if you'd been increased to somewhere nearer full replacement dose after 6 weeks on starting dose of 50mcg.
I understand you are concerned about the issue of it being subacute thyroiditis and 'will it get better on it's own', and to be honest , i don't know how they find this out once they have started a patient on Levo.. but regardless of what they decide to do about coming off Levo later to see if it's got better.... the fact remains that if you are going to be on Levo for a while, you need to be on ENOUGH of it, or you will feel unwell and the TSH will remain too high. and sometimes, yes it will even go higher , despite being on Levo.
Ask GP why they only increased by such a small amount when you (presumably ?)are not a frail elderly biddy with a dicky heart.
TSH 3.62 [0.27 -4.20] .. i would have though this is high enough to require a bigger increase than just 12.5mcg..... show GP this article from GPonline .. written by specialist registrar cardiologist and specialist registrar Endocrinologist . Clearly recommends getting TSH to between 0.5 and 2 healthunlocked.com/thyroidu....
Thank you so much for taking so much time. I am constantly amazed how much people know in here and how that are willing to help. The Endo said on Friday that he didn't want to overwhelm me with to big jump in dude so recommended only this much. I'm not seeing GP about that since at the beginning of the ST i was told I have probably an infection and swollen lymph nodes hence why the limo in my neck. I was told to stay in bed, take paracetamol to get rid of the fever. I suggested for 3 weeks this way! And since then NHS Endo wanted to send me to the surgery "just in case", I went privately.
like you , i'm getting increasingly horrified at how quickly it is suggested to whip out someone's thyroid gland or part of it, (or irradiate it which seems to be potentially worse than surgery the long term) without waiting to see if there's an alternative that allows the possibility of keeping it . I think they just don't have an appreciation of how important it's role is in producing variable amounts of T3 in response to need, or for regulating the proper function of so many of the body's systems .
I'm glad you didn't just accept surgery when they suggested it ... i mean ,OK , if it's growing so big underneath someone's collar bone that it's going to squash things, or if it really does look like a cancer, or it's hyperactive and they've tried both antithyroid drugs but they are knackering the patient's liver.. then fair enough , they have no choice but to take it out, and we must accept that replacing an intricately variable control system with an inflexible daily dose will be second best.
But honestly, they way some NHS Endo's carry on, you have to wonder if they actually appreciate the difference between the function of an appendix and the function of a thyroid gland , and whether they are getting 'air miles' coupons for every thyroid they whip out.
There is such good access to informed opinions on latest scientific research here .( in fact some of those scientific researcher's are advisors on here, see 'Diogenes' posts.. he is an inventor of some of the fT4/fT3 tests) ,plus the real lived experience of 118,000 people , and 10+ years of actual case histories and detailed results to be found on here, that you can probably do a better job of understanding your thyroid problem and treatment yourself , rather than believe what you're told in a hospital , .. welcome to world of thyroid disease .. the only diagnosis that comes with a free DIY degree in endocrinology . It's just a shame you get to do it when your brain feels like it's made of porridge 
The following article was written by a bloke who was HM The Queen's physician when she is in Scotland rcpe.ac.uk/sites/default/fi... Thyroid hormone replacement – a counterblast to guidelines. "....I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly
reluctant to suggest ablative therapy with iodine-131 or surgery in patients with Graves’ disease, irrespective of age or number of recurrences of hyperthyroidism....."
So you are not alone in thinking their current offering for 'thyroid treatment options' stinks.
TSH going up on Levo?
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Can Levo cause a higher heart rate?
Low TSH headaches and weight gain
Levothyroxine and reduced TSH.
