Hi, I'm new to the forum and hoping I can get some advice on my blood tests and the best way forward.
A bit of background first. My Dad was hypothyroid from about the age of 50, although never tested for Hashimotos. My younger sister has recently been diagnosed with Hypothyroid & Hashimotos, after virtually self diagnosing and telling her doctor what to look for! Her TSH was 28 at this point. She is now on Levo and told me to get checked out too. I have been going through the perimenopause since the age of 40, 7 years ago and although I have had my thyroid checked, it came back normal - I now understand the importance of checking that statement. I have suffered from many of the symptoms associated with hypothyroidism and put them down to menopausal symptoms, but can see now that they could have easily been a cross over from a struggling thyroid?
In September 17 my results were:
TSH 6.72 (0.35-5.00)
T4 12.2 (9.00-22.00)
TPO antibodies >1000 (0.0-5.6)
Ferritin 30ug/l (10-200)
B12 286ng/l (200-910)
HbA1c 42 (20-41)
Cholesterol 5.3 (2.00-5.00)
March 18 results:
TSH 7.96 (.035-5.00)
T4 11.8 (9.99-22.00)
Vit D 25 OH 72 (50-200)
Just seen my doctor today and as expected she wants to wait & see, retesting set for September 18. She will not test my T3, or re test my b12, ferritin, antibodies etc as they have been done recently & is intent on just looking at the guidelines, which say wait. She is interested in my potential for type2 diabetes, which she says is not related to my Thyroid or Hashimotos - I disagree?
I was lucky to get a referral to an endocrinologist in November 17 (different doctor), however he was mainly interested in my menopause symptoms and why I wasn't on HRT. Pretty much dismissed the Hashimotos and told to take selenium, which would help with my antibodies. He offered no other advice.
I currently am gluten free which I believe is helping with tiredness, brain fog, weight & general well being. I also supplement selenium, magnesium & D3 for the anxiety, low mood, joint pain (have also had frozen shoulder, plantar fasciltis in these last couple of years).
Reading posts on here, I think my ferritin and B12 are too low, which may be contributing to dry hair, skin, nails would appreciate advice on this? I'm also considering getting my blood done again, privately, so that I can see where I am now & try and work on supporting my thyroid, while I wait hit the GPs guidelines for treatment.
Right now I feel physically 'off', rather than I'll, but feel I have been given an opportunity to try and catch things early before I become ill and am frustrated with the lack of help, so any advice would be really welcome. 😊
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Louife49
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You are hypothyroid. If we lived abroad we'd be diagnosed if TSH goes above 3 but in the UK they wait till it is around 10. They do not know any clinical symptoms which we used to be diagnosed upon (before blood tests were introduced).
Your latest results show that you are hypo with a TSH of nearly 8, T4 near bottom of range and Vit D very low. It would be good if the professionals did a Full Thuyroid Function Test which is TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.
You have an Autoimmune Thyroid Disease = called Hashimoto's - hashi's for short.
This is due to the antibodies which attack your thyroid gland and wax and wane until you are hypo but treatment is the same i.e levothyroxine. Starting dose 50mcg with 25mcg increases every six weeks until symptom-free and TSH of 1 or lower. Going gluten-free can reduce the antibodies.
email Dionne at TUK and ask for a copy of Dr Toft's Pulse Online article and highlight the part where he says if antibodies are present we should be prescribed levothyroxine 'to nip things in the bud'. Her email is below.
tukadmin@thyroiduk.org
Both ferritin and B12 are too low. Others will respond on how to increase. High cholesterol reduces when we take thyroid hormones.
If you want to get private tests we have two recommended labs which will do those and they are home pin-prick tets and if you decide to go this route make sure you are well-hydrated a couple of days before and arms are warm.
Thank you Shaws, I will definitely get a copy of the article you've suggested and do my own blood tests. Once they've come back I'll post again. I really appreciate the support and being made to feel like im not creating a fuss about nothing! 😊
Hi Treepie, thanks for replying, but sorry to hear that you're now diabetic. I will start looking into links. It's all part of the endocrine system, so wouldn't be surprised. 😊
Ah,but I reduced my carbs ,no more cakes etcand increased fats ,plenty of butter and three months later was back to pre diabetic and still there 12 months on so it is controllable.
When you have anti-bodies attacking your Thyroid - you need to be taking Levo/T4 to support your thyroid whilst under attack . Well this was how my Greek explained things to me back in 2005 when I was diagnosed here in Crete.
Ferritin is better around 70 I have read - B12 over 500 and VitD around 100++
Did you take the HRT ?
Yes GP would be more interested in diabetes - they probably earn more for diagnosing and prescribing than they do with the lowly thyroid.
I have posted recently about shoulder joints and thyroid .... and Plantar Fasciitis - well there are loads of posts here about it. Why leave treatment until you are on the floor - how sadistic the NHS have become in the name of saving money.
You have begun your journey and already you are doing some positive things - now for the treatment. Does your Doc know about the family connections ?
That's kind of what my understanding was, but I don't think she is interested in the antibodies, as apparently there is nothing I can do once I have them...
No, never went for HRT in the end. Felt at the time that more hormones would just just confuse my body and delay the inevitable. Did the whole Sage and omegas thing to help symptoms.
I will take a look at posts re shoulder joints. I did have this treated as the pain was hard to bear and now get a bit of ache, which magnesium is brilliant for.
Doc is fully aware of family connections, hasn't affected her stance I'm afraid.
The above post is about shoulder pain and thyroid I posted recently !
I am horrified that there is nothing to be done about anti-bodies - well not if you are a NHS GP tied into a contract that pays you very well but does not allow you to persue wellness for their patients. Auto-immune issues are one of the biggest issues in medicine today and mostly start with the gut - but because it is all about lifestyle changes and finding the root cause the NHS are not interested. Too much money at stake in prescribing pills and potions for the various symptoms that are presented to GP's daily. Financial rewards are built into the system for prescribing expensive drugs.
I have Hashimotos - Crohns - B12 Deficiency and a lifetime of illness possibly starting with vaccine damage ! Click onto my name above and you can read my edited Bio in a few minutes. Feeling good today but far from an expert - just sharing !
You know you have Hashi's/Hypothyroidism, you now just have to persuade your GP to treat you and this might help from thyroiduk.org/tuk/about_the... > Guidelines for the Use of thyroid Function Tests
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.
If thyroid antibodies are found, then you may have Hashimoto's disease. If there are thyroid antibodies but the other thyroid tests are normal, there is evidence that treatment will stop full blown hypothyroidism from occurring.
Dr A Toft, consultant physician and endocrinologist at the Royal Infirmary of Edinburgh, has recently written in Pulse Magazine, "The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat the thyroid function tests in two or three months in case the abnormality represents a resolving thyroiditis.2 But if it persists then antibodies to thyroid peroxidase should be measured.
If these are positive – indicative of underlying autoimmune thyroid disease – the patient should be considered to have the mildest form of hypothyroidism.
In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow-up."
As Shaws has suggested, send for the Pulse article and it is Question 2 that you should highlight and show your GP to back up your request to start treatment with Levo.
**
As for vitamins and minerals
Ferritin 30ug/l (10-200)
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. Low ferritin can suggest iron deficiency anaemia so it would be worth asking for a full blood count and iron panel. If you are prescribed iron tablets then take each one with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds (when prescribed) and two hours away from other medication and supplements as it will affect absorption.
You can also 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...
**
B12 286ng/l (200-910)
Check for any signs/symptoms of B12 deficiency here b12deficiency.info/signs-an... and if you have any then further testing will be necessary so you would have to discuss that with your GP.
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."
So you're looking at 550 minimum for B12.
You also need Folate testing as B12 and folate work together.
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HbA1c 42 (20-41)
This does indicate a risk for diabetes. Maybe look into ways to try and lower this naturally. My friend, who was diagnosed and treated for diabetes, started using Mulberry Leaf Extract and is now below the level for diabetes and off medication.
**
Cholesterol 5.3 (2.00-5.00)
This should lower when the hypothyroidism is treated.
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Vit D 25 OH 72 (50-200)
The Vit D Council recommends a level of 100-150nmol/L. You wont get anything prescribed by your GP with this level so I suggest you buy your own D3 supplement. As you have Hashi's then the best supplement will be an oral spray eg Better You as this bypasses the stomach for better absorption. I would buy the 3000iu strength and take 3000iu daily for 3 months then retest. When you've reached the recommended level you should find your maintenance dose by trial and error, it may be 2000iu daily, maybe more, maybe less, maybe more in winter than the rest of the year. It's important to retest twice a year when supplementing to ensure we stay within the recommended range.
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
Thanks for all the information, really appreciate the time you've taken. I'm certainly going to get the report and will check out the vit/mineral suggestions you've made.
I think I needed some confirmation that this wasn't all in my head and I'm not trying get medication for the sake of it. I just don't want to be on the floor before I get help and end up with more complications, which I have a chance of avoiding.
Hi reallyfedup, I think my GP is quite hung up on her guidelines, so eventually this is likely to be my only option unfortunately. A shame as she's very nice, but I don't think very clued up about the subject, sadly i think I know more and that's not saying much! 😊
Hello, you wouldn't by any chance have any references for this would you? I tried the BTA and NICE websites and can't find anything that says it must be treated if there are antibodies, and this would be really helpful to show my doctor!
That's awful! I can't believe they've changed it! So frustrating when you have symptoms and they won't even give you a trial of Levothyroxine or even run the full bloody tests!
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