I am new diagnosed hypothyroid in 2012 and taking 100mcg levo. I have been told results are normal but why do I have symptoms of tiredness and cramps and weight gain and bone pain and dry skin? Lately been feeling dizzy and having chest pains, neck swollen and eyes and ankles going puffy. I am even having trouble wearing my engagement ring which is getting tighter on my finger.
The last time I went to the doctor she asked if I was stressed and I felt like a hypochondriac.
Advice welcome, I just feel lost right now.
Thanks
TSH 4.01 (0.2 - 4.2)
Free T4 13.3 (12 - 22)
Free T3 3.1 (3.1 - 6.8)
Written by
LucianaK
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Your TSH is too high and your FT3 is too low. You need a dose increase. Your GP should know that but clearly does not. Find a new GP that understands thyroid disease. Make sure you have your blood tests first thing in the morning and don't take your levo until after the test. If you take any other meds or supplements take them at least 4 hours after you take your levothyroxine.
Have you got blood test results for thyroid antibodies and have you had vitamin levels tested?
LucianaK Oh, I've just got to say this, so sorry if it offends
GP says 800iu vitamin D is enough, I have been on this since 2013 and results done Jan 2017
Well, your GP is a prat! Doubly so if he thinks your thyroid results are normal, and triple if he's done nothing about your ferritin, folate and B12. Oh I despair, I really do!
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TSH 4.01 (0.2 - 4.2)
Free T4 13.3 (12 - 22)
Free T3 3.1 (3.1 - 6.8)
Your TSH is very top of range, your FT4 is extremely low in range and your FT3 has scraped in at the very bottom. How can this be normal?
According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.
The booklet is written by Dr Anthony Toft, past president of the Briish Thyroid Association and leading endocrinologist. It's available from pharmacies and Amazon for about £4.95.
Also -
Dr Toft 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)."
If you would like a copy of the article, email louise.roberts@thyroiduk.org , print it and highlight question 6 to show your GP then ask for an increase in dose.
Increases should be in 25mcg increments followed 6 weeks later by a retest and another increase, repeat until you feel well and symptoms abate.
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Thyroid peroxidase antibodies 97.5 (<34)
Thyroglobulin antibodies 406.3 (<115)
Has your GP bothered to tell you that you have autoimmune thyroid disease aka Hashimoto's as confirmed by your high antibodies? This is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.
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.
Read and learn so that you can help yourself, doctors don't seem to attach much importance to antibodies or don't even understand them.
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Ferritin 12 (15 - 150)
Have you had an iron panel and full blood count carried out? If not ask for them to be done to see if you have iron deficiency anaemia.
You need treatment for this below range ferritin, and will need treatment for iron deficiency anaemia if diagnosed.
Ideally you need an iron infusion so ask for one, but you may only be prescribed tablets which will take months to raise your level whereas an infusion will raise your level within 24-48 hours.
If prescribed iron tablets take each one 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.
Ferritin should be half way through it's range, with an absolute minimum of 70 for thyroid hormone to work.
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...
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Folate 2.9 (4.6 - 18.7)
Vitamin B12 201 (190 - 900)
You are folate deficient with very low B12. Do you have any signs of B12 deficiency b12deficiency.info/signs-an... If so then post on the Pernicious Anaemia Society forum quoting your Folalte,B12, Ferritin (iron deficiency if you know) and any signs of B12 deficiency you are experiencing. They will give further advice and you will need to discuss with your GP. You may need testing for Pernicious Anaemia, you may need B12 injections. See what they say and follow their advice healthunlocked.com/pasoc/posts
Folate should be at least half way through it's range and 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 28.3 (25 - 50 deficiency)
800iu D3 daily since 2013
I would be tempted to ask your GP why, after 4 years of supplementing, is your Vit D level still in the Deficiency category.
800iu D3 isn't going to ever raise your level, never in the reign of pig's pudding, as you probably now realise. It is hardly a maintenance dose for someone with a reasonable level.
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 maintenance treatment of about 800 IU a day. Higher doses of up to 2000 IU 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 regimens 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 demand that he treats you according to the guidelines and prescribes the loading doses. Once these have been completed you will need a reduced amount 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 sensible 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/
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 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
•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.
Personally I would see another GP and point out that this GP has told you everything is normal when it clearly is not. You may want to consider making a formal complaint against this GP.
All great advice from SeasideSusie and she's right, your doc is incompetent if they've not addressed your deficiencies and incorrect to tell you these results are normal. Clearly they are not, not even by NHS calculations!!!
No wonder you still feel ill. Thank goodness you didn't listen to your doctor's trying to make out you were stressed! Your body's stressed by not getting enough levothyroxine and nutrients. Deficiencies are likely caused by gut problems and low stomach acid causing poor vitamin absorption which we suffer from when hypothyroid.
I must be feeling magnanimous tonight - but really I'm getting more and more furious about people being made to feel they are at fault and not being given the most basic healthcare!
Reply below was back at SeasideSusie by the way....BUT at least she is having these tests done...I never have, will be getting a private blood test done soon.
Did you check the level of antibodies? I have the feeling that even that the results are normal abtibodies play a huge role on overall health condition. They might not attack your thyroid, but they can attack other organs. That's the feeling i've got being diagnosed eith hashimoto 7 years ago.
I thought the antibodies are antibodies. I thought it's only one kind of antibodies circulating in blood that can attach all other organs and create other autoimune diseases like celiac, lupus, rheumatoid arthritis???? A bit confused. I probably should read more and educate myself right about it.
Every different autoimmune disease has it's own type of antibodies, that will only attack that one part of the body. The Hashi's antibodies are called Thyroid Peroxidase antibodies or Thyroglobulin antibodies. For Pernicious Anemia, it's Intrinsic Factor antibodies. For Grave's, there are Thyroid Receptor antibodies. Etc. etc. etc. Lots of different types of antibodies that can be tested for.
The only exception to that, I believe, is Grave's antibodies, which can attack other organs.
Thankyou! This made me educate myself on antibodies. This info was very usefull and much more stress relief. I started to be afraid of other autoimune deseases and was reading about all of them...now I can concentrate on mu own hashimoto...thanks again🌹
As you have Hashimoto's then hidden food intolerances may be causing issues, most common by far is gluten. Changing to a strictly gluten free diet may help reduce symptoms and eventually start to lower antibodies. Very very many of us here find it really helps and is essential to be gluten free
your tests are far from 'normal' normal to your dr maybe as he obvs has no idea. i battled an idiot dr for 6 years before i took charge, please dont waste your time like i did. I didnt have a support group then and didnt know any better....those are years i will never get back.
All your tests show you are ill. Today make changes and start to feel better xxx
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