Hi, I've been having various symptoms over the past 10 years and finally narrowed it down to thyroid issue. As my GP refused to test me, I did it privately via BlueHorizon. My result shows TSH as 5.5 (normal range is below 4.2 according to BlueHorizon) and I have all symptoms. I am dreading to seeing GP as I've just found out that they will not treat me unless it is above 10 !!! So seeing them is quite pointless. I sleep only 2 hours a day as without any reason I wake up. Can anybody suggest what are my options? I am even considering to take this matter to court, as I want to get healthy. I cannot understand how I can be diagnosed with it, but not be treated.
Please advise. Many thanks, S.
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4better
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When you did the BH test, did you also have antibodies tested, and vitamins and minerals? Always best to do this as so many clues are within those results, particularly antibodies. If you have a high TSH, symptoms and positive antibodies, this can often get you a diagnosis and prescription for Levo.
I've tested 6 parameters via BH and antibodies; they are Thyroglobulin antibody - 15 IU/mL and Thyroid Peroxidase antiboy - 18 IU/mL. I am not sure what this means.
Via GP I did standard blood test and I know I am low on calcium, iron (for which I take supplements), and serum creatinine (no idea what is that). Everything else looks fine on my blood test.
In regards to my symptoms - and there are quite a few - my GP said they are not related (?!), so that is why I am very concerned that it wont be taken seriously.
I guess I do not know where to find someone, who can actually interpret the results and how to get treatment, as I am mentally and physically tired.
4better Your antibody results are negative for autoimmune thyroid disease (however, one negative doesn't rule it out completely, you'd need a few over time to do that). I can say that because I know the ranges for BH results - TPO <34 and TG <115. (If you want any test results interpreted, we need reference ranges as well because ranges vary from lab to lab.)
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With regard to the iron supplements, was it ferritin that was tested, did you have a full blood count and iron panel too? 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. A good way of raising ferritin is 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...
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.
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Creatinine measures kidney function.
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Was Vit D measured? That's very important, along with B12 and folate.
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There are quite a few members who can help interpret blood test results.
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What were your FT4 and FT3 results? Were they normal (within range)?
Have a look at the list of signs and symptoms of hypothyroidism on ThyroidUK
Print the list, tick off what affects you then show your GP and say that as you have over range TSH with all those symptoms then subclinical hypothyroidism should be considered - see thyroiduk.org.uk/tuk/about_...
"The 'UK Guidelines for the Use of Thyroid Function Tests' state that, "There is no evidence to support the benefit of routine early treatment with thyroxine in non-pregnant patients with a serum TSH above the reference range but <10mU/L (II,B). Physicians may wish to consider the suitability of a therapeutic trial of thyroxine on an individual patient basis." If your TSH is above the range but less than 10, discuss a therapeutic trial of thyroxine with your doctor.
Subclinical hypothyroidism (where there are elevated TSH levels, but normal FT4 levels, possibly with symptoms) has been found in approximately 4% to 8% of the general population but in approximately 15% to 18% of women over 60 years of age.
Subclinical hypothyroidism can progress to overt hypothyroidism (full hypothyroidism with symptoms) especially if there are thyroid antibodies present."
See also bestpractice.bmj.com/best-p... and click on High TSH - associated with a normal FT4 and/or FT3 (if indeed your FT4 and FT3 were normal) and you will see
"High TSH - associated with a normal FT4 and/or FT3
•Subclinical (or mild) hypothyroidism occurs when TSH is above reference range with a normal FT4 and FT3. The risk of progression to overt hypothyroidism is 2% to 5% per year. [42] The risk is higher in patients with positive TPOAb. [43] The decision to treat these patients is controversial. Generally, thyroxine replacement is not recommended when TSH is below 10 mIU/L. [44] TSH and FT4 should be repeated at 6- to 12-month intervals to monitor for improvement or worsening in thyroid status in untreated patients. [42]"
This is amazing ! I cant believe I get so much information here. Thank you.
In regards to Iron, it simply says 'serum iron level', so I am afraid i do not know what it refers to.
I think I had Full Blood count, as there are a lot of other parameters, like to total white blood count etc, but nothing next to Full blood count row.
Looks like I need to eat a lot, a lot of liver.
I've posted FT4 and FT3 results below; I am not sure if it is low. Thank you, I will show the doctor the link. I pray she listens to me.
All I really hope is to try the medicine and if I am significantly better, sleeping 6 hour in a row would be nice, then I will try to find (if possible) natural remedies, change lifestyle if needed, and do certain amount of exercises to reduce medication (if possible).
Thank you for this advising on Hashimoto. Glad to hear I am clear of that
I took thyroid test via BH in the morning this month. The results were:
Total Thyroxine (T4) 80 nmol/L (59 - 154)
TSH 5.50 mIU/L (0.27 - 4.2)
Free Thyroxine 15.1 pmol/l (12 - 22.0)
Free T3 4.7 pmol/L (3.1 - 6.8)
Thyroglobulin antibody 15 IU/mL (0 - 115)
Thyroid Peroxidase antibodiesy 18 IU/mL (0 - 34)
I had blood test done in July in the evening. I ended up in the hospital, hence why I've got this test. The results were:
Calcium 2.16 mmol/L (2.2 - 2.6)
Iron 6 umol/L (14.0 - 28.0)
Vitamin D 54 nmol/L (no normal range is shown)
B12 345 ng/L (220 - 700)
Folate level 7.1 ug/L (2.6 - 17.3)
Ferritin 10 ug/L (10.0 - 420.0)
TSH 3 miu/L
I know that in 2010, my Free T4 was 13 pmol/L and TSH was 4.8 miu/L. For some reason GP tested me for that in 2010. I need to find out what was the reason.
So your FT4 and FT3 are classed as normal, check the list of signs and symptoms and if you have some then pursue the sublincial hypothyroidism I mentioned.
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Iron 6 umol/L (14.0 - 28.0)
Serum iron is below range. This isn't ferritin. Ferritin is iron store - think of it as the pantry where your iron is stored. Your body needs iron, it goes to the pantry to get some, but the pantry needs to be replenished so there's some there next time you body wants some iron.
Ferritin 10 ug/L (10.0 - 420.0)
This is dire! As I mentioned previously, ferritin needs to be at least 70, preferably half way through range.
These were done in the hospital? If so, what did they say? If the hospital did nothing, then your GP absolutely must.
With a ferritin this low you really need an iron infusion which will raise the level within 24-48 hours, tablets will take months.
Speak to your GP. You also really need an iron panel and full blood count to see if you have iron deficiency anaemia.
Come back and tell us what GP is going to do about these.
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Vitamin D 54 nmol/L (no normal range is shown)
This is far too low but not low enough for your GP to do anything about it.
The level recommended by the Vit D Council is 100/150nmol/L.
My suggestion is to buy some D3 softgels like these bodykind.com/product/2463-b... and take 5000iu daily for 3 months. When you've reached the recommended level then you'll need a maintenance dose which may be 5000iu alternate days, maybe less, 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/
VIT D
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
As taking D3 will aid the uptake of calcium from food, you may find your calcium level will rise, so I wouldn'd do anything about the fact that your calcium is below range at the moment. It will be worth checking once you've reached the recommended level for Vit D.
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B12 345 ng/L (220 - 700)
Folate level 7.1 ug/L (2.6 - 17.3)
Thee work together. Folate should be at least half way through it's range (so 10 plus with that range).
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."
I keep my level at around 1000. Sublingual methylcobalamin lozenges are what's needed if you wish to self supplement, start with 5000mcg daily then when the bottle is finished change to 1000mcg daily as a maintenance dose, along with a good quality B Complex to balance all the B vitamins.
Thorne Basic B is highly recommended here and it contains 400mcg methylfolate which will help raise your folate level.
I've taken a lot of vitamins as per suggestion from SeasideSusie, and although I didnt feel massive improvements, those around me noticed that I have more energy. I have noticed however I sleep more than 3 hours a day - it now increase to 5-6 hours a day, which is massive improvement.
So I currently have daily:
*Ferrous fumarate (iron) 610 mg
*Vitamin B complex
*Vitamin B12 1000 µg
*Vitamin D3 125 µg
*Calcium 400 mg
*Sea Kelp (Iodine) 450 µg
*Selenium 400 µg
*Multivitamin
I was taking the above for about 2 weeks before i had my blood test, which GP agreed to. It showed:
Free T4 - 13 pmol/L (norm 9.0 - 25.0)
TSH - 4.1 miu/L (norm 0.3 - 5.0)
It looks like my TSH decreased, however I think it might have something to do with the amount of vitamins I am taking. I also understand that I could simply not convert T4 to T3, and that could cause the symptoms I have.
I have no knowledge of those tests so can't comment other than to say that your calcium is slightly below range, surprising as you are supplementing with calcium and vitamin D aids absorption of calcium from food.
As for the vitamins and minerals that you are taking,
B12 - I would have started with 5000mcg daily as suggested.
Selenium - 200mcg is the normal recommended dose, I think 400mcg is OTT especially if you haven't tested to see where your level is.
Ferrous fumarate - are you taking this with 1000mg Vit C to aid absorption and help prevent constipation, and are you taking it 2 hours away from other supplements ta and medication (some Ned 4 hours.
Vit D - are you taking this with the fattiest meal of the day and are you taking K2-MK7 and magnesium, D3's important cofactors?
Sea kelp - why? Did you test your iodine level and was it deficient? If not we shouldn't take iodine.
Multivitamin - generally a waste of time and money as they contain too little of anything to help and usually the wrong and least absorbable form of ingredients. Also if it contains iron nothing else will be absorbed (iron needs to be taken 2 hours away from any other supplements), if it contains calcium then even the iron won't be absorbed, and as you've tested and are already supplementing where needed so there's no point in a multi.
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You can know how well you convert T4 to T3 unless you have FT4 and FT3 done at the same time, and ideally TSH round 1.
Also, to compare results accurately you need the blood drawn under the same conditions every time. We always advise the very earliest appointment of the morning as that's when TSH is highest, it lowers throughout the day. Also, fast overnight because eating lowers TSH, water allowed, breakfast after blood draw. So if you do those then you will get the highest possible TSH which is needed for diagnosis and when looking for an increase in dose of Levo or to avoid a reduction for those diagnosed and on thyroid meds.
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I did not realise how to respond to the messages. You can tell, I am a newbie in terms of forums. :), so thank you for letting me know on how to respond.
Somehow I missed out on amount of B12, so I've increased the dosage.
I wasn't taking vitamin C as I have a lot of lemons during the day, however after your message I read on amount of C in lemon, and obviously I am not taking enough so I improved on it, by taking tablets.
I take D3 with its 'friends', so hopefully it will improve.
As my doctor told me that unless my TSH is 8, he wont prescribe me any medicine, I thought to read more on 'natural' methods. I came across a few articles about impact of iodine on thyroid and a simple (not necessary accurate) test I could do at home. I needed to put a patch of iodine on my forearm and see if it disappears in 24 hours. Mine disappeared in less that 8 hours, meaning I could be low on iodine. As iodine can cause poisoning, I am taking selenium. However I am planning to stop both very soon.
I wish I could try something natural which will 'fix' my thyroid.
I will try to push the doctor to test me for both T3 and T4. In any case I will buy medicine from abroad and try for a month. I think I need about 25mcg daily. If my symptoms disappear, then I can prove I have hypothyroid. Last time the doctor offered me to do meditation !, as it will help with the issue. They just follow NHS guidance.
I sleep so much better; it is the second night when I struggle to wake up after 6 hours of sleep; it is amazing feeling for me. I havent had a proper sleep for years. I hope it will get better and better.
So I want to thank you (and everyone else on this forum) who help me and many others to improve.
Iodine is anti-thyroid. It was used to treat hyperthyroidism, it can make you more hypo. The home test where you paint iodine on your body is very unreliable. Iodine should only be used if tested and found to be deficient, and then under the guidance of an experienced practioner. I would stop it now. You can continue with the selenium, it helps convert T4 to T3.
Are talking about buying T3 or Levothyroxine from abroad? If you're thinking about T3 then there's no way you can know if you need it at the moment. You have to know how well you convert T4 to T3, the only way to know that is for TSH to be around 1, and your nutrient levels need to be optimal. Taking T3 if you don't need it can cause problems, it's not something to mess around with just in case you might need it, and there's absolutely no way you would start with 25mcg if you did need it, it has to to be introduced gradually.
Thank you for all your advice. I stopped Iodine and I am still taking various vitamins. I changed my diet last month and making sure i have a smoothie in the morning with good stuff, like carrots, beetroots, spinach, apples. And i stopped any processed food. So hopefully it will all help.
Although I feel much better and my energy level is so much higher than 8 months ago, I still have hypo's symptoms. I am planning to see GP and ask for another thyroid test, however I doubtful it will be lower than 4.5
I am planning to buy Levothyroxine from abroad; it is quite cheap. I've read here btf-thyroid.org/information... that a standard does is 100 and 150 micrograms a day, which depends on weight. I've looked here globalrph.com/thyroid_calc.htm and it advises start from 25 to 50 mcg per day. What would you recommend ?
Don't forget that for a diagnosis of Hypothyroidism we need TSH as high as possible (10 is the magic number for diagnosis). When having blood tests for thyroid, book the earliest appointment of the morning and fast overnight. This gives the highest possible TSH.
I would check your vitamins and minerals again and see if you have managed to raise ferritin to at least 70 and Vit D to 100-150nmol/L, plus your B12 to over 500.
Did you ask your GP for a full blood count and iron panel to see if you have iron deficiency anaemia. This is very important.
If your nutrient levels are good and you want to self source Levo then you should follow the protocol your GP would i.e. start at 25mcg or 50mcg then retest after 6-8 weeks. If you need to increase it should be in 25mcg I with retesting every 6 weeks. FT3 should stay within range.
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