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Thyroid UK
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Decrease levothyroxine

Hi gang really confused was diagnosed 5 years ago hypo been so called stable for 2 years on 75ncg levo I say so called because my rashes are terrible. Have been told today have COPD doc also said by bloods are 0.50 so might be good idea to decrease to 50mcg.what do you think anyone. Thanks

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75mcg is a very low dose

You are legally entitled to printed copies of all your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

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 Thyroid antibodies are raised

Have you ever had thyroid antibodies tested?

Vitamins need testing regularly and frequently need supplementing to maintain at optimal levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to 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. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

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Hi Thanks for reply. I asked for T3 but was told it won't be done because TSH OK. My daughter has Hastio so it made sense to check mine as her diagnosis after mine. My ferratin was fine seemingly. I will ask for print off. Yes 75 is low I was on 50 2 years ago but bloods were 14.5 she said so added the other 25 which is why I am wary of reducing again.

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Then like thousands of us on here you need to get FULL Thyroid and vitamin testing privately

Just testing TSH and FT4 is completely inadequate

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Hi Angel, it's more likely you need an increase. Is the .50 your TSH? Never mind that now that you have been on Levo for so long. More common dose is 125 mcgs.

Now about your rash....almost always gut related. Possibly too many sugars and starches. Using HCL Betaine with meals or even unfiltered apple cider vinegar can be helpful. Are you taking n-acetyl-cysteine for your COPD and also co-q-10 and ubiquinol?

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Sorry, don't want to hijack the post but what is HCL Betaine or unfiltered ACV for?

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Hi Anne, they both help to metabolize nutrients. With hypo the stomach doesn't produce enough hydrochloric acid to do the job of breaking down food into nutrients like amino acids and minerals. This is why we begin to have deficiencies. Vinegar also contains some probiotics and a little acid but not as strong as HCL. If this doesn't happen, larger particles end up in the bloodstream and that starts an immune reaction. These toxins end up making blood thick and sometimes the reason for high blood pressure. Being hypo, we don't detox well and that causes all kinds of symptoms. I also think we need digestive enzymes and proteolytic enzymes. As we age our pancreas may not produce all the enzymes we need and if we have low metabolism it makes for real digestive problems.

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Thanks Heloise at first the doc said increase then said oh no decrease when I called to question today saying I had taken my levo before the test so was not convinced on a decrease she said it makes no difference the levo is built up over time so only a few days would make a difference. Also said it border line so it's my decision.... They refuse at our lab to do a thyroid ab it says on the results Thyroid antibodies are of limited use in patients with known primary hypothyroidism or on thyroxine.

Not on any meds for COPD except inhaler only got yesterday.

I feel like a fool every time I go docs.

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Is your inhaler a steroid? I REALLY feel you should get your thyroid numbers at optimal levels because who knows what other problems are merely due to low thyroid. Every organ is dependent on thyroid hormone because EVERY cell needs thyroid hormone.

Your lungs and heart also need co-q-10. The amino acid NAC keeps mucous thin and is an excellent antioxidant. So try those and increase your thyroid hormone before the inhaler if it's safe. Magnesium is also essential.

Her thoughts about T4 are true in that as previous doses dissipate and the half life of thyroxine is two weeks you need to replenish the right amount to keep whatever you need in your system at a stable level. So it would take about two weeks to see a change in your T4 numbers but after you take a 50 or 75 mcg pill it may cause an immediate rise temporarily. I don't know how exactly but that's why they feel it's best to wait 24 hours before drawing blood. I also don't know (which means I don't think anyone knows, haha) the rate at which your thyroid gland is going to reduce production of thyroid hormone. This means it is hard to evaluate what your ailing gland is able to produce and most people end up on a dose that you can live with and it is usually not 50 mcgs. and often 125 mcgs. This is where your symptoms can let you know and also taking your temperature/pulse a la Broda Barnes are signs that you are optimal.

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Thanks Heloise going to get some private bloods done and will get the co q10 and mag. It's just a salbutamol inhaler she is waiting for CT scan before referring to specialist very early days for treatment it only came to light on an x Ray

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Good, wishing you well toward health. Get an absorbable mag like glycinate or orotate. Magnesium is a crucial factor in the natural self-cleansing and detoxification responses of the body. It stimulates the sodium potassium pump on the cell wall and this initiates the cleansing process in part because the sodium-potassium-ATPase pump regulates intracellular and extracellular potassium levels.[xxvi] "ATP production is essential for every cell to have an ample supply to deal with the challenges of metal overload, as it is required to even permit the cell to keep on pumping out calcium.

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Hi Angel. I had rashes on my wrists for ages. After some research myself (I could be totally wrong so please research yourself) I read that the bromine and chlorine pushes out the little good iodine in our diet. My thinking was the extra iodine in Levothyroxine was actually working and the not so good bromine/bromide was extracting out of my body through my skin which caused my rashes.... apparently, this is a symptom of too much bromine. I didn't change brand and GP prescribed and I asked for Betnovate...the rashes we're gone in a couple of weeks. I put up with the rashes for a while (which I made sure didn't get infected) because I wanted the bromine to come out but of course after a while unsightly rashes aren't good. Please do your own research but I considered my body was getting rid of bad stuff and was half pleased about it.

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Thanks Flipper 22 my rash appears more when stressed or hot I'm on fexifenadine an antihistamine and detomol cream useless

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Either the levo is causing a rash or you are reacting to something else

It sounds like your GP knows zero about thyroid and is very wrongly trying to use TSH alone to treat Hypothyroid

Gluten is a known trigger of problems in hyoothyroid patients and all forms of it should be totally removed from you diet for at least 3 months

Go back to your GP and request a full thyroid function test if

TSH

FreeT4

FreeT3

Thyroid antibodies

B12

Is run because no way is 75mcg or 50 mcg a therapeutic dose

Also ask for a copy of your original test results on diagnosis and find out what results have been in past years ...then its vital to start a file so you can understand and monitor it

Make very very sure all blood draws are always very early morning

Fasting and drink only water

Never never take your levothyroxine in the 24 hours before a test ...take it after

Testing differently can totally skew results but few doctirs know or tell you this

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Yes your right they know nothing. Lab refuses antibodies as TSH normal but refused at the start. I started levo when TSH was. 18.5 on 50mcg then reading was 8.5 then 14.3 so put me on 75mcg 3 other blood test 0.3 0.4.054. Same month as diagnosis my periods stopped I wonder if that had impact menopause. Am going to have to have private bloods

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Private testing is what thousands of us rely on. The best set of tests to fully monitor your condition include TSH, T4, T3, antibodies, VitD, B12, ferritin and folate. When the vitamins and minerals are at optimal levels you should be able to get the best dose of thyroxine sorted. If you have Hashimoto’s, autoimmune thyroiditis you will possibly get some relief through diet. Plenty on this forum have this and can help more than I can as I have no antibody problems at all. Good luck going forward. x

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Sadly realllyfedup 123, many labs refuse to test any more than tsh, irrespective of what a GP requests. GPs have been trained for some years now to treat by tsh. To find a GP who fully understands all the ins and outs is becoming less common. Our NHS is in dire straits financially so it is harder for GPs to be able to prescribe some items. It is unfortunate that NICE isn’t helping our cause too much. It is easy to say it is the fault of GPs .

I cannot agree with all the advice you have given to angel 1306. Yes the full thyroid panel needs to be tested. However in addition to B12, vitD, ferritin and folate need to be tested. When these are optimal it will be easier to find the correct treatment for thyroid.

Gluten is a problem for those with Hashimoto’s, autoimmune thyroiditis however it makes no difference to those of us with no antibody issues. I know that we only make up 10% of those who are underactive. Advice regarding gluten should, I feel, only be given when it is known a person has antibody issues.

I have known people who are adequately medicated on a lower dose. In the 55 years I have been underactive I have seen changes to how it is handled and met a fair number of people on varying doses of medication.

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The refusal to test more than TSH at the outset totally misses Central /pituarity or Tertiary hypothyroid which is criminal because it occurs far more than they accept

And it often seems to strike the children of Hashimotos patients

Majority of Hypothyroid is caused by Auto immune Hashimotos which since its i herited all children should always be screened too

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All babies are checked at birth and have been for years in the uk. I do know the problems of tsh being the rule of thumb in diagnosis. As I said I do know that 90% of hypothyroidism is due to Hashimoto’s/autoimmune thyroiditis.

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Trouble is, the screening is not ideal.

The first thing is timing - doing the test too early means that the mother's thyroid hormone can still be present in sufficient quantity to miss lack of a thyroid. Too late and the baby can already be suffering.

As you say, use of TSH is serious being questioned in some quarters.

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All my grandkids were tested at birth but that did not stop them developing Hashimotos age 9, age 13,age 15,age 18 , our daughter was 16 when tested and we were assured there was no way she would develop Thyroid Disease yet at 23 after 2 pregnancies she was well into severe Hashimotos and Central Hypothyroid

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My daughter was diagnosed year after me her GP in another area and they test her often she has antibodies her t4 is often OK but not t3 she currently on 100mcg.when I ask my GP if any simuality she says unlikely???? My GP is obviously not interested I guess.

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Your daughter can only have aquired Hashimotos Antibodies from parents or grandparents so your GP is ignorant ...its a travesty that too few doctors and patients will face the inherited nature of Auto immune disease or that AI disease seems to get stronger and more devastating with each generstion

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I totally sympathize with you. I'm exactly the same, on 75mcg levothyroxine daily and my skin erupts all over my body. The Dr calls it chronic urtecaria and says the cause is unknown!! Their only 'solution ' is diprobase cream which I religiously cover myself with daily to no avail! I can't even be seen in shorts these days let alone a swimsuit😟

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Same here Ritwa its so soul destroying it's more my neck and face itching is terrible

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Sounds like you cant tolerate synthetic levothyroxine .what make are you on ...TEVA is probkematical for many .

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The 25 is currently Wockhardt and the 50 is mercury Pharma they alternate with another one in orange box

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Thats not right ....have you checked the contents of the make of levothyroxine ?

Some have Acacia powder in them

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One is lactose and one is sucrose?

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My neck starts itching within mins getting up and taking pills don't eat for a hour after cause walk dog first

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Doubting allergy to tabs as this has only been 2 years out of 5?

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If the itching starts after taking the pills ...its whats in the pills

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Just saw some posts about Mercury Pharma thyroxine so going have word with chemist to start with. Thanks

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Before I started taking allergy-free Levothyroxine (gluten, dairy, corn and soy-free), I had some issues on Eltroxin (little bumpy rash on the right forearm, rash above my right eye and breaking out in a bad hot rash every second day). Here in Ireland there is only one Eltroxin, so I'm getting Letrox from back home, it's produced in Germany by Berlin Chemie. Since using it, have no problems whatsoever with skin stuff.

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Thanks cupofcha will look into it

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