No improvement with Levothyroxine increase - Thyroid UK

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No improvement with Levothyroxine increase

StarsEnd profile image
13 Replies

I am male 63 years old weigh about 80kg. I have Haemochromatosis (iron overload for which I am now on maintenance; venesection every three months).

I was diagnosed with Hypothyroidism Jan 22 after I decided to take a private thyroid test. I told my Surgery and they put me on 50 Levo. After a blood test request from my surgery the dose was increased from 50 to 75 Levo. The brand was changed from Mercury pharma to Teva.

The GP asked for a blood test follow up so I decided to get a Medichecks Advanced Thyroid test. Results below which I showed to my GP. They seem to be mostly in range except the antibodies. Update - Having read through more posts last night it would seem that I am still under medicated. (TSH should be around 1 ?)

Inflammation

CRP HS 0.36 mg/L (Range: < 3)

Iron StatusFerritin 116 ug/L (Range :30 - 650)

VitaminsFolate - Serum 17.1 nmol/L (Range: 8.83 - 60.8)

Vitamin B12 - Active 93 pmol/L (range 37.5 -188)

Vitamin D 103 nmol/L (range 50 -250)

Thyroid HormonesTSH 2.79 mlU/L (Range: 0.27 - 4.2)

Free T3 4.4 pmol/L (Range: 3.1 - 6.8)

Free Thyroxine 17.7 pmol/L (Range: 12 - 22)

AutoimmunityThyroglobulin Antibodies 198.4 kIU/L (Range: 0 - 115)

 Thyroid Peroxidase Antibodies 224.6 kIU/L (Range: 0 - 34)

 Observation Date : 19-NOV-2022. Blood test taken before 9:00am. no Levo that morning.

However I do not feel any better, in fact things are getting worse. Slight pain in stomach area (just under ribs, r.h.s; comes and goes) and suffer with bloating and gurgling stomach and it feels full all the time. (I know Teva can cause stomach issues). Also brain fog , loss of concentration, feeling very cold, aches and pains in lower half of body, (muscular and/or neuro) etc. Is there any hope I may start to improve? I have some Mercury Levo left, should I try that at 75 and see if that improves things? I am not on any vitamins at the moment although Doctor has recommended Vit D.

Please, I would be grateful for your opinions.

Happy New Year to you all.

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StarsEnd
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13 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group.

I am still under medicated. (TSH should be around 1 ?)

That's right. You are still very under replaced. Also males usually need higher doses than females. I'd take your results to GP who might want to repeat the test, and then push for the next dose up. Perhaps ask them to write 'not Teva brand' on the first line of the prescription. Stay off Teva brand if you suspect it's causing tummy issues. Many people are affected the same way.

You may need to push your GP to up your dose. GP's are happy when our results are 'within the range', however this is a long way from making us feel well! We need TSH under 1 and optimal vitamins. Emphasis your symptoms.

Your folate is a tad low, Thorne Basic B is recommended here (shop around online for best price) which contains all B vitamins. That will bring up your folate.

Antibodies fluctuate naturally so high levels not to be concerned about but indicates you have Hashimoto's Disease, an autoimmune thyroid condition. You could eperiment with trying a gluten free diet which helps many with Hashi's.

StarsEnd profile image
StarsEnd in reply to Jaydee1507

Thank you very much for your advice. I am getting an ultrasound this week and then presumably will then speak to my GP. (I will raise the issue of increasing my dose).

I am also starting a gluten free diet this week🤞

tattybogle profile image
tattybogle

Hi StarsEnd. you're correct. your dose still need to be increased. (not surprising , most of us end up needing somewhere between 75mcg -150mcg before we begin to feel better) .

So (assuming you've been on 75mcg for at least 6 weeks) ask GP to increase dose to 100mcg and see how you feel on that . (GP will probably need own test done first. so make sure it's done @ 9 am again or else TSH may be lower).

If GP is reluctant to increase because TSH is now in range , show him this list of references advising GP's to keep TSH below 2 ish. healthunlocked.com/thyroidu....

Don't expect miracles all at once though . finding the exact right dose for the individual and then allowing the whole body to get properly better takes time .

I copied this from a reply i found written years ago by  Achilles_Pain . but it's very true.

"The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far.

Other people will be along who can advise re. Vitamin levels.

Request GP writes No TEVA on prescription, or just ask around some chemist's and find one who is willing to be helpful and not give you that brand if you get your regular prescription sent to them. Some are helpful .. some will patronise and insist there is no affective difference between the Levo brands ,but they are out of date ~latest MHRA advice does state some patients have problems with brands. I just found a helpful chemist and haven't had any teva for over year , and i've been doing much better since then, (i didn't get any stomach symptoms from TEVA , but i avoid it now because compared to the other brands i eventually noticed that whenever i was given it , after about a week, i felt generally Naff whereas i'd been feeling ok before).

MHRA Safety update re. switching brands of Levo "If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation." (will add link later when i've found it) gov.uk/drug-safety-update/l...

StarsEnd profile image
StarsEnd in reply to tattybogle

Thank you. I will speak to my GP about raising my dose. It sounds like it’s going to be a long process.

tattybogle profile image
tattybogle in reply to StarsEnd

yep .... you know that story about 'the tortoise and the hare' ... you're currently the tortoise.

StarsEnd profile image
StarsEnd in reply to tattybogle

thanks Tattybogle 🙂

Let’s hope it sticks to the script and the tortoise wins!

radd profile image
radd

Welcome to our forum,

I also have Hashimotos and Heamochromotosis. 

I initially found venesection difficult as after effects were awful (internal vibrations, headaches, feeling sick & dizzy), and I put it down to poor adrenal health. However, now been diagnosed several years, thyroid hormones are optimised and working effectively, adrenal reserves replenished and venesection is exactly like donating blood (as it should be). 

I don’t find switching Levo brands difficult but but there are members who appear to be intolerant of certain brands. However, I would say gut issues are extremely common in hypothyroidism. There is a finely tuned eco system going on within our guts and years of inadequate thyroid hormone slows everything including gastrointestinal motility, resulting in low gastric acid, malabsorption issues and gut infection.

Low thyroid hormones also compromises adrenals, initially making cortisol levels rise which triggers histamine release, promoting an inflammatory response and leaky gut. Therefore, I would be looking to go gluten free (possibly dairy free also) and if gut issues persisted then investigate some comprehensive testing for gut dysbiosis.  

Elevated antibodies evidences an unwanted autoimmune response on your thyroid gland. Folate looks a bit low and you remain under medicated on Levothyroxine at 75mcg which is a low dose. Levothyroxine should be increased every 6 weeks until TSH reduces to around 1 or just under and/or thyroid hormones optimise within range.

Ferritin seems high for haemochromatosis. What is your maintenance target? Have you a transferrin saturation % figure? 

StarsEnd profile image
StarsEnd in reply to radd

Thank you.

It’s very promising for me to hear that you have sorted out both Hypothyroid and Haemochromatosis.

Yes the Ferritin is high. My maintenance level is 50 but I missed an appointment last month. I am due another venesection next week. I haven’t got a transferrin saturation figure but I will ask next time.

As I replied to Jaydee I am starting a gluten free diet this week.

SlowDragon profile image
SlowDragonAdministrator

Approx how old are you

Guidelines on eventual dose levothyroxine likely to be required is approx 1.6mcg levothyroxine per kilo per day

So likely to need at least 2 more increases over coming months

Then may need to fine tune levothyroxine

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

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.

High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

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.

GP should test for coeliac disease

nice.org.uk/guidance/ng20/c...

1.1 Recognition of coeliac disease 

1.1.1 Offer serological testing for coeliac disease to:

people with any of the following: 

persistent unexplained abdominal or gastrointestinal symptoms 

faltering growth

prolonged fatigue 

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

SlowDragon profile image
SlowDragonAdministrator

Hemochromatosis and Hashimoto’s

redriverhealthandwellness.c...

jamanetwork.com/journals/ja...

The frequency of thyroid disorders in men with hemochromatosis is about 80 times that of men in the general population.

StarsEnd profile image
StarsEnd in reply to SlowDragon

Thank you.

I am 63 years old. I had a negative coeliac test this year (2022).

The links to the articles are very informative. I’m due a maintenance venesection next week so hopefully I’ll be below the 50 Ferritin level again.

Thanks for all the replies and the hard work you all do in helping people with Thyroid issues.

SlowDragon profile image
SlowDragonAdministrator in reply to StarsEnd

At moment most important thing is get dose levothyroxine increased (and avoid Teva by sound of it)

once you get levothyroxine dose increased to roughly right level consider trialing strictly gluten free diet

approx 5% with Hashimoto's test positive for coeliac, but a further 80% find 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 slowly lower TPO antibodies 

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...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/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

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.

sometimes the only obvious improvement is a slow reduction in TPO antibodies

StarsEnd profile image
StarsEnd in reply to SlowDragon

Thanks a lot for all the information. I am definitely going to try the gluten free diet. I just want to start feeling better again.

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