I am new, I am 26 years old, is it ok for me to go from 150mcg levo to 25mcg levo? Endo says I should. Diagnosed 2011 with hypothyroid thanks for reading
SEP 2017 (150mcg levo)
TSH 0.03 (0.2 - 4.2)
FREE T4 20.9 (12 - 22)
FREE T3 4.0 (3.1 - 6.8)
OCT 2017 (50mcg levo)
TSH 7.6 (0.2 - 4.2)
FREE T4 13.1 (12 - 22)
FREE T3 3.2 (3.1 - 6.8)
NOV 2017 (50mcg levo)
TSH 0.02 (0.2 - 4.2)
FREE T4 20.3 (12 - 22)
FREE T3 4.3 (3.1 - 6.8)
Symptoms -
Hard stool
Fullness in ears
Headaches
Muscle twitches
Hair loss
Dry skin
Swelling in neck
Dry mouth
Absent periods
Bags under eyes
Tiredness
Bone and joint pain
Breathlessness
Weight gain
Bloating
Memory loss
Written by
LLK2
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Why on earth would you want to go from 125 micrograms to 25 micrograms?
The November results you have posted don't show you are over-medicated.
That is a dramatic reduction. Although there will be exceptions, adjustments should be made slowly - e.g. 25 micrograms a day or less, and not more than once every six weeks.
helvella is there a national conspiracy to make all thyroid patients extremely ill?? I can't believe that yet another person is being treated like this by their Endo. Is there no stopping this cruelty? Or is there a bot in the system masquerading as a patient? This could be one and the same post as 100 others.
so sorry LLK2 you should never have your thyroid meds reduced by huge leaps. As helvella says, it's usual to reduce by 25mcg and retests in 6 weeks.
As you can see from your Sept results, FT3 and FT4 are in range and in fact FT3 is fairly low in range. If you were overmedicated then your FT3 would be above range. So it would have been higher than the top of the range you've given which is 6.8.
I am just fed up of having to prove to the endo that I am hypo when he says I am too thin to be hypo and he wrote to my GP saying my symptoms aren't thyroid related and that I am hypochondriac and have health anxiety
Endo said my TSH is too low and that I am too thin for a hypo person, I don't understand what I have to do to prove to him that I am hypo and feel hypo
"Endo said... that I am too thin for a hypo person"
Utter drivel! There is no rule that says hypo patients have to be overweight. Endo is a jerk, also help doesn't know how to treat Hypothyroidism.
TSH is irrelevant when on thyroid replacement as it is not a thyroid hormone, it is pituitary hormone. The pituitary looks to see if the thyroid is producing enough hormone, if not it tells the thyroid to produce some by sending a signal TSH (thyroid stimulating hormone), in this case the TSH will be high. If there is enough hormone (as in when taking thyroid replacement hormone such as Levo) the TSH will be low. Important information bypass frequently happens where this is concerned!
SEP 2017 (150mcg levo)
TSH 0.03 (0.2 - 4.2)
FREE T4 20.9 (12 - 22)
FREE T3 4.0 (3.1 - 6.8)
These results did not warrant a reduction at all. In fact it shows that you don't convert T4 to T3 very well and that you would benefit from the addition of T3.
Some of your symptoms are indicative of low nutrient levels. If you have had them tested please post results, with ranges, for comment and say if you are supplementing:
Vit D
B12
Folate
Ferritin
Also, I'm guessing that you have raised thyroid antibodies and if you've had TPO and TG antibodies tested, please post those results also.
Endo said I am hypochondriac and have health anxiety and that was what he wrote in a letter sent back to my GP I have TPO antibodies 504.5 (<34) TG antibodies >1200 (<115) I supplement but feel no better on what I take thanks
As I said, endo is a total jerk and doesn't know what s/he is doing.
You are not a hypochondriac and you should refute the health anxiety diagnosis and ask for it to be removed from your records.
Your symptoms are caused by your Hashi's and very likely dire nutrient levels. As I asked, please post your levels and say what you are supplementing.
Your high antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results. Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
I had problems taking the iron tablets (ferrous fumarate) and the GP said that was the only iron they could prescribe me so since I have problems taking the ferrous fumarate the GP stopped prescribing it.
Did you try floradix? Some folk find iron tabs cause constipation - but you can take Vitamin C to help (& it boosts absorption).
I eat liver & onions - but if you can't you do need to sort iron deficiency it is painful and causes further problems in the long-term - please don't think it will just go away - it won't
Hmm, ferritin is stored iron so Hb will be topped up first, not enough to spill over to fe storage? - so maybe you weren't taking enough for your needs.
I should declare that I have never needed to take iron supplements - so I hope others will suggest some alternatives- but I hope you haven't stopped taking some form of iron altogether. My Vit D deficiency didn't ease until 3 months of supplementation & the shin pain got worse to start with.
Have you tried 200-250g of liver a week? Liquid Floradix (spelling? Boots, Superdrug and H&B sell it) works for me as the tablets cause constipation and other issues which I believe are in the fillers. If I’m travelling I take tablets but also I take chlorophyll in liquid form.
Spatone is really too weak to do anything. My ferritin actually dropped when I tried it. Try a haem iron or ferrous gluconate - but you need a high dose to get to normal levels or even in an iron infusion
•Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible).
•Treat with oral ferrous sulphate 200 mg tablets two or three times a day.
◦If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.
◦Do not wait for investigations to be carried out before prescribing iron supplements.
•If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian.
• Monitor the person to ensure that there is an adequate response to iron treatment.
You need to speak to your GP and ask for appropriate treatment to be started immediately.
If prescribed, take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.
As your ferritin is below range, you should ask for an iron infusion.
Your GP wont know but for thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range.
You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...
You are folate deficient with very low B12. Check here for signs of B12 deficiency b12deficiency.info/signs-an... then please post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc quoting folate/B12/ferritin results, iron deficiency information and any signs of B12 deficiency you may be experiencing from the list linked to.
You may need testing for Pernicious Anaemia, you may need B12 injections, you certainly need folic acid prescribing for the folate deficiency but that shouldn't be started until further investigation has been carried out and B12 started.
I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:
"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."
And an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
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VITAMIN D 31.3 taking 800iu
If your level was less than 30 when first prescribed D3, then you should have been given loading doses - see NICE treatment summary for Vit D deficiency:
"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.
For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."
Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and ask if he will treat you according to the guidelines (if your level was originally below 30, considering it is now only 1.3 above) and prescribes the loading doses. Once these have been completed you will need a reduced amount (more than 800iu so post your new result at the time for members to suggest a dose) to bring your level up to what's recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/
If your GP wont prescribe the loading doses then just buy your own D3 and take the equivalent, which will be about 10,000iu daily for 4 weeks then reduce to 5000iu daily, then retest in 3 months with City Assays as mentioned above.
Your doctor wont know, because they are not taught nutrition, but there are important cofactors needed when taking D3
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds
Hashi's and gut absorption problems tend to go hand in hand and this will be the reason for your low nutrient levels/deficiencies.
You need to heal your gut for nutrients to be absorbed, and when nutrients are optimal then thyroid hormone can work. Please see SlowDragon 's reply to this post for links and information to help healthunlocked.com/thyroidu...
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Whether it was your GP or endo who has ignored these dire results, I would get treatment sorted then consider making a formal complaint against whoever has left them like this. I would also ditch the endo because s/he hasn't got a clue and will do you more harm than good.
I had problems taking the iron tablets (ferrous fumarate) and the GP said that was the only iron they could prescribe me so since I have problems taking the ferrous fumarate the GP stopped prescribing it. Vit D was under 30 at diagnosis thanks
As for the D3, see what your local guidelines say. You can Google 'Vit D deficiency treatment *your area*' and if it also says below 30 then complain and insist on the loading doses now. If it says below 25, it depends on what your original level was.
I struggled with ferrous fumerate but Solgar Gentle Iron worked for me. I took two a day which raised my levels over several months and I now take 2 per week maintenance. I always took with a high dose vitamin c. Your doctor is really crap by the way! I thought mine was but mine was positively perfect compared to yours! Can you swap doctors?
Hi there i have had difficulty with iron tablets and could not take usual gp prescribed ones- gp refused iron injections, so i have to do it myself. I now take blueiron liquid as its very gentle and ive had no problems so far but will see if it raises my iron levels. Have a look at blueiron website. I dont know how true it is but was told its not the strength of the supplement that matters but how well it is absorbed? X
Utter drivel re saying you're hypochondriac and have health anxiety. I hope once you've got your thyroid meds back again and sorted out any vitamin deficiencies you'll make a complaint about your treatment by this Endo.
An Endo is not qualified to make a mental health assessment. You can refuse to accept his 'opinion' because that's what it is, an uninformed opinion..
In fact, I would write to your GP, copied to Endo and refute the Endo's opinion vigorously on the basis that he is not qualified to make such a statement and that he reduced your thyroid medication and you subsequently had a flareup of your autoimmune condition which can clearly be seen in your blood test results.
I would get your vitamin levels tested because I bet you've got deficiencies that the ENdo should have tested for as well.
Oh dear, it gets worse. You are so deficient in everything. Why are you not taking any iron supplements and has the Endo referred you for investigations into your low B12?
I see that SeasideSusie has responded and she has the best vitamins advice.
I had problems taking the iron tablets (ferrous fumarate) and the GP said that was the only iron they could prescribe me so since I have problems taking the ferrous fumarate the GP stopped prescribing it. No investigations into low B12
GP said that was the only iron they could prescribe me
More cr@p. The NICE CKS referred to above says
◦If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.
What on earth is your GP thinking, knowing you have iron deficiency anaemia, knowing you can't tolerate ferrous fumarate, so he just leaves it untreated. Another reason to make a formal complaint.
LLK2 ~ please, please take advice from members on this forum and ignore the poor and dangerous advice from endo! You are 26 years old ~ I have been at the mercy of idiots like this for as long as you have been alive! Apparently, I am also a hypochondriac with anxiety disorders ~ I also am thin, only developing a huge abdomen recently, which is thankfully shrinking thanks to advice from members.
The endo will make you ill and the GP will listen to him and keep you ill. I know it's difficult to assimilate this information and accept the fact that these 'learned' professionals don't understand your illness, but it's true! Judging by the posts on this forum of late, there is an epidemic of ignorance rapidly emerging ~ and assuming they're all genuine, we are in deep trouble and descending fast!!
So please don't follow my poor example of listening to GPs and specialists, unless they are actually improving your health, or you WILL have an anxiety disorder, caused by hypothyroidism and THEM!! If I had found this forum years ago, I'm convinced I would have had a different life ~ you have found it, so don't waste any more of yours ~ read around the forum for information ~ it's all there if you search, learn everything you can, and ask questions if you don't get it ~ you have more help here than you will ever get from 'specialists' who have financial incentives. If you have financial constraints, save up for tests that NHS don't do and sort out vitamin and mineral deficiencies as advised by members.
I know this can be a drawback, having to pay for all this can get expensive, but this is the only drawback, and really the only way back to health for most of us, so not much choice really under this ridiculous system.
I really can't bear to hear these stories of medical abuse, especially in young people who run the risk of ill health for years to come. I hope you make the right choices and get your health back.
Some people either don't put on weight, or even lose weight when hypothyroid.
One of the reasons for losing weight is actual loss of muscle. This is serious as your heart is pretty much all muscle. However, making you hypothyroid is NOT the answer.
I don't know why you - or anyone - loses muscle mass. I speculate that it is due to insufficient intake of the right proteins, possibly due to poor digestion, possibly diet. Or maybe inadequate levels of other dietary components such as vitamins and minerals?
You don't have to 'prove' anything to him. He's a terrible doctor, dump him. There is no such thing as too thin for hypo. People can be hypo and be fat or thin - Stupid Endo's seem to think that patients treat thyroid meds like some kind of weight control device which of course we don't, we simply want to be symptom free.
Have you had thyroid antibodies tested? Check for TPO Thyroid peroxidase antibodies and TgAb Thyroglobulin antibodies blood test results. If you have not had them tested then go to your GP and ask GP to test them. If you have antibodies it would explain the fluctuation in thyroid test results when you were on 50mcg of levothyroxine.
The chances are your Endo is a diabetic specialist and knows nothing about thyroid hormone or how to treat thyroid conditions. Lowering your thyroid medication may have caused thyroid autoimmune condition to flare up again but you will only know this if you find out whether you have antibodies or get them tested.
I had problems taking the iron tablets (ferrous fumarate) and the GP said that was the only iron they could prescribe me so since I have problems taking the ferrous fumarate the GP stopped prescribing it.
All the more reason then for GP to try you on another type of iron and if you have absorption problems then GP should rule out pernicious anaemia too. Is there another GP in the practice you could see?
Words fail me! I can't spot anything that is your fault! On the other hand ............. Don't blame yourself as this isn't your fault! I wish we could put this so called expert in your shoes for a month. Lots of good advise so nif going to double up but I hope you are soon back on the right track and starting to feel much better patience is needed as it's a slow process but good luck.
They are the B12 experts - and along with that, folate.
Have you had a Full Blood Count? Especially MCV and RDW? Low folate and low B12 both cause the size of your red blood cells to increase. At the same time, your iron deficiency will tend to make the red blood cells smaller. So your average red blood cell size (MCV) can be "normal" but with some under-sized and some over-sized. That is altogether bad. Even without any thyroid issues, this could make you feel pretty bad.
Just want to add, don't in your wildest dreams take on any blame here. Your medical support has been dreadful.
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels stop Thyroid hormone working
Many/most endo's seem to have no idea or interest in sorting gut issues, but they are key to getting better
You do NOT need to drop dose of Levothyroxine
Your probably struggling to gain weight because your gut is not functioning
When you see GP ask for testing for coeliac disease. Blood test is pretty unreliable, but there's probably at least 6 months wait for endoscopy.
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.
No, no no!!! Your free T3 is already too low and free T4 is in range so you are not overmedicated. You need some T3 added to your levo, If you reduce by that much you will be very, very ill. Get a new endo - fast - before this one kills you. At the most, a dose reduction should be only 25mcg at a time and you don't need a dose reduction
Change doctors fast. He's bad for your health. Do not reduce T4 , you need to add t3. You are still hypo.
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Unexplained symptoms advice needed please
Looking for help or advice
Asked to reduce to 25mcg levo
