To little levothyroxine?: Hi iam new here so... - Thyroid UK

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To little levothyroxine?

Bridkid67 profile image
17 Replies

Hi iam new here so thanks for being accepted my thyroid journey is a follows had numerous thyroid blood test a couple came back abnormal and some border line last one in 2022 came back TSH of 5.2 so Dr started me on 25mcg of levothyroxine next blood test 3.9 a few weeks later so he upped it to 50mcg been on that for a while got another blood test on February 23rd so i wait and see Dr says he wants my TSH to be about 1 also i take allopurinol for gout and slightly raised blood pressure and i take 1.25 mg of rampiral for that just wondering are they all connected as ive read it somewhere thanks .

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SlowDragon profile image
SlowDragonAdministrator

so he upped it to 50mcg been on that for a while got another blood test on February 23rd so i wait and see Dr says he wants my TSH to be about 1

Good GP is aware on levothyroxine that TSH should be low

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 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG 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.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Bridkid67 profile image
Bridkid67 in reply toSlowDragon

Thanks for that my GP says he going to test my vitamin levels as well because last time he said they were reduced i take a vitamin d spray plus Cod liver oil but ive always taken that for years so does it sound like i need an increase in levothyroxine? Thanks

SlowDragon profile image
SlowDragonAdministrator in reply toBridkid67

50mcg is only the standard STARTER dose

So it’s highly likely you will need further increases over coming months

Being hypothyroid frequently leads to low vitamin levels

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

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.

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

LilacandMint profile image
LilacandMint in reply toBridkid67

Make sure he tests magnesium, calcium and phosphorus, as well as vitamin D. Magnesium is essential for the conversion of T4 (levothyroxine) to T3 plus another 300 or so biochemical actions! It should be 0.85 or above. Include foods high in magnesium in your diet. If you need magnesium supplement then use one or other (or a combined prep) of magnesium malate, magnesium glycinate or magnesium citrate.

Vitamin D should be 50 or above but is better if it is above 75. It helps to regulate calcium and phosphorus in the blood. Low vitamin D causes rickets in children and osteomalacia in adults. Make sure that your diet contains food sources for vitamin D. When it is sunny expose your face and forearms to at least 15 minutes in the sun (without suncream). We get most of our vitamin D from the action of the sun being absorbed by the skin. Suncream creates a barrier to that important chain reaction. As well as too much time spent indoors. Everyone in the northern hemisphere should supplement with vitamin D from the beginning of October to the end of March.

Calcium because vitamin D controls calcium and phosphorous in the blood. Low vitamin D lowers phosphorus. However the bigger problem is that low vitamin D causes the parathyroid glands (four tiny glands that sit behind the thyroid and control calcium and phosphorus in the blood) to increase parathyroid hormone (PTH) which raises calcium in the blood. They act on a feedback loop similar to TSH and the thyroid. If vitamin D is low (below 50) but supplementation does not reduce PTH and calcium remains in the high end or above the range, that is a condition called hyperPARAthyroidism (HPT) which is nasty. One or more of the parathyroid glands don't 'switch off' when calcium rises. The calcium is drawn from the bones and causes untold damage throughout the body affecting the bones (osteopenia/osteoporosis), kidney problems, heart disease, cognitive and neurological problems. The only cure is surgery to remove the rogue parathyroid gland(s). Sadly Endos are often I'll informed about HPT, even though it is the third most common endocrine disease.

greygoose profile image
greygoose

also i take allopurinol for gout and slightly raised blood pressure and i take 1.25 mg of rampiral for that

Raised blood pressure can most certainly be due to hypo. But gout not necessarily. I had gout before Christmas and did a bit of research. But all I could find was that hypos are more susceptible to gout, although the the low thyroid probably doesn't cause it.

greygoose profile image
greygoose in reply togreygoose

I thought this post might interest you on the subject of gout:

healthunlocked.com/thyroidu......

LilacandMint profile image
LilacandMint in reply togreygoose

Raised blood pressure and gout can also be caused by raised calcium.

greygoose profile image
greygoose in reply toLilacandMint

True. But that's called pseudo gout. It's mentioned in the link I gave above.

Wua13262348 profile image
Wua13262348 in reply togreygoose

You say you had Gout before Xmas. Bear with me on this. Questcor used to provide Synacthen for testing adrenal insuffiency at a cost of £2.70. It became unavailable in 2016, due to take over, I think by Mallinckrodt in 2014. Mallinckrodt are Irish/American , but really American. For tax purposes , to avoid high taxation in USA they paid tax in Ireland. A tax dodge! When Mallinckrodt first made it available to the NHS they raised the price to £45.71. Posology changes were made to it as they launched the drug for GOUT. There are scandals mentioned with various firms, and price fixing with extortionate price increases , exactly like the T3 pricing debacle , to do with hydrocortisone too. At one point the NHS were forced to make do with prednisolone administered with careful dosing, as hydrocortisone was unavailable. When it became available again it was extortionately priced, whereas prednisolone is cheap. There was a separate scandal going on with drug companies over hydrocortisone where orphan drug status played a big part.

The point of this post is to draw your attention to your GOUT being likely related to your adrenals and/or kidneys. Synacthen is used to test ACTH. (adrenal corticotropic hormone) Synacthen or a modified version of it , is also used for nephrotic syndrome which is kidney related. I know that in the dim , distant past , you were prescribed HYDROCORTISONE for a time. So possible problems then with the HPA axis ,which usually goes hand in hand with HPT axis, which relates to you saying "hypos are more susceptible to gout, although the low thyroid probably doesn't cause it."

Off topic, but relevant to recent Prolactin investigations I have undertaken. You take T3 only . Yourself and DippyDame, dose T3 only. Thyroid hormone resistance being the most likely reason to necessitate this. When your hypothyroidism was at its worst and you started on thyroid hormones, do you know what your Prolactin status was????? Was it normal range, below range, mildly above range, or sky high?????? This may be totally irrelevant BUT I SUSPECT, ( DON'T KNOW), that if you both carry genetic mutations which result in thyroid hormone resistance, they will exert their influence mitochrodrially , within the cell. They MIGHT be to do with, mRNA??????, which is to do with genetics??? I think Radd probably has a good understanding of that sort of area????

Dippy Dame has a long standing problem with imbedded UTIs which are kind of kidney related. Vitamin B12 deficiency seems to be the root cause of just about everything, and we all seem to have problems with vit B12. I only recently discovered that as well as being stored in the liver, it is stored in the kidneys. In the same way that the body prioritises magnesium to the blood when needed, taking it from other places to make sure there is enough in the blood- uniquely, the kidney will relinquish stored B12 first ,if needed elsewhere. I therefore wonder if her methylcobalamin B12 needs to be at a higher level, bearing in mind that B12 needs folate and all the other B vitamins to work properly. Active B12 needs sufficient B2.

DippyDame (first time I've managed to tag!)

greygoose profile image
greygoose in reply toWua13262348

Wow! You have been doing some thinking!

But I'm a little confused by your conclusion. What exactly are you saying there? That I should be taking a B complex? I do.

But I have never, ever been tested for prolactin, so I can't answer that question.

Wua13262348 profile image
Wua13262348 in reply togreygoose

There is a post that Eric107 made about 8 days ago , "Hashimoto's and Multiple Sclerosis ( Apologies for two posts in quick succession)". If you read these and the web sites mentioned you will get a good overview of just how big a deal Prolactin is. I am not suggesting you have Multiple Sclerosis at all. Nothing like that.

You say in your profile that you have had weight problems since the age of 8 years old, and always inflammation or an infection of some kind. You describe 2013 and possibly 2020??? as prolonged stress, big time. Prolactin is involved in so many things, but prolonged stress affects it. I think that high OR low Prolactin is involved in obesity problems. Low Prolactin , for example, can have a detrimental effect on weight gain, glucose and lipid metabolism. Prolactinomas , for example, suppress the dopaminergic tone, and, consistently, have been shown to be associated with body weight gain and obesity. Inflammation and infections can also relate to Prolactin levels. Prolactin is always tested for thyroid investigation as if Prolactin is elevated, you will commonly have hypothyroidism. As Tsh rises out of range, so too does Prolactin if someone has primary hypothyroidism. I have elevated Prolactin, but just to be awkward, I had in range TSH . I don't believe my hypo is primary.

It is an absolute disgrace that considering all the consultations you have had with various idiots for your hypothyroidism, that none have checked your Prolactin. Prolactin could be a big part of your problems, and possibly, your Prolactin levels since the age of 8 may have caused your hypothyroidism???

The B12 bit was more for DippyDame, and to make forum members aware of what, I think , must be recent findings re. the kidneys being unique in releasing stores of B12 to where it is needed in the body. I wasn't aware that both the liver and the kidneys stored it, believing storage was in the liver. As a general rule, the root of just about everything looks as if it leads back to B12 deficiency. If the body prioritises a need for B12 elsewhere, kidney function likely suffers. A common hypo symptom seems to be repeated UTIs. Hence B12 might be important re. UTIs. Prolactin problems also can involve the kidneys in the form of chronic kidney disease.

I think you should have your Prolactin checked, even at this late stage.

greygoose profile image
greygoose in reply toWua13262348

Well, to do that I would have to see a doctor. And I have absolutely no intention of doing that! I can't actually do that because doctors are like gold dust round here and I have little chance of ever actually finding one!

But, even if I did find I had high/low prolactin, is there anything one can do about it?

Wua13262348 profile image
Wua13262348 in reply togreygoose

Yes , very possibly, depending on your circumstances. BUT, not to self treat. The web sites I referred to in the reply to Eric 107's post give very full explanations of all sorts of scenarios with prolactin. In some circumstances, if prolactin is sky high or there is a prolactin adenoma secreting, tablets in the form of dopamine agonists can be given to reduce the size of an adenoma if , say pressing on a nerve, or structure, for instance. The output of prolactin can be reduced if over secreting. Prolactin is secreted and inhibited by Dopamine in the presence of Oxytocin. Hence a dopamine agonist tablet, in some circumstances, if appropriate. Your weight problem from childhood MIGHT be prolactin related and it is Local Prolactin secretion that has specific functions for steroidogenesis (processes by which cholesterol is converted to steroid hormones). You have had historical problems with steroid hormones. You trialled hydrocortisone in the past and seem to have had problems with low cortisol, and your adrenals, I think. I have no expertise on this subject at all, I would hasten to add. I fully expect that you will understand the literature far better than I do.

I know you are in France. I don't know if this precludes you from using Medichecks or Blue Horizon in the UK or not. A home Prolactin only test , for example, is £45 if a venous draw, with Medichecks. Blue Horizon offer it as a finger prick test for £59. As tests go , relatively inexpensive. But, if results threw up an unusual test result , it would not be something you would self treat. Prolactin will be commonly tested in France, I would imagine, for things like period related problems and fertility in females, and infertility and impotence in men, as well as hypothyroidism. Prolactin is by no means restricted to lactation , fertility etc. If a Prolactinoma was suspected , Prolactin would be tested. If warranted , an MRI scan would be done. Your nearest big city should be able to facilitate these possiblities , if appropriate.

I can tell from your response that you'd rather poke your eyes out with a sharp stick than see anyone in the medical profession, even if it wasn't a near impossible ask to find a member of said profession. I fully understand why. They would need to be competent even if you did locate someone. A very rare species indeed!

Without getting involved with the medical establishment, the idea that Prolactin is possibly problematic to you is a non starter. It might be that Prolactin is not relevant to your situation at all.

greygoose profile image
greygoose in reply toWua13262348

I know you are in France. I don't know if this precludes you from using Medichecks or Blue Horizon in the UK or not.

Yes, it does. I've already asked.

Prolactin will be commonly tested in France, I would imagine, for things like period related problems

Ha ha! I've had those all my fertile life! All they could suggest was a hysterectomy. I had one when I was 41.

I can tell from your response that you'd rather poke your eyes out with a sharp stick than see anyone in the medical profession

How did you guess? lol And, frankly, the chances of finding any sort of doctor that even knows what prolactin is, are pretty slim, I should imagine. Most of them don't even know what T3 is! So, I think I'd be backing a loser, there, and I just don't have the time or the energy to find out. But, thank you for trying to help. That's all very interesting. :)

Wua13262348 profile image
Wua13262348 in reply togreygoose

"I've had those all my fertile life" , certainly seems to validate possible Prolactin Involvement. I'm so sorry you find yourself in the position you are in. Sorry it hasn't really helped.

greygoose profile image
greygoose in reply toWua13262348

That's ok. :) I've survived to the age of 78 as I am, so I'll probably go on for a few more years. Why start rocking the boat now? :)

SlowDragon profile image
SlowDragonAdministrator

Gout and hypothyroidism

palomahealth.com/learn/gout....

ncbi.nlm.nih.gov/pmc/articl...

Conclusion

This large observational study does not provide evidence that hypothyroidism or hyperthyroidism, irrespective of treatment, is associated with a clinically relevant increased risk of developing incident gout. There may be an exception among patients with newly diagnosed and treated hypothyroidism.

amjmed.com/article/0002-934...

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