Hi all, i've been suffering for the last few years with various menstrual problems and possible Thyroid. I took a Thriva test last year and my antibodies were high but GP disregarded the test. I was referred to Endo who also said I was not hypo. I have had a scalloped tongue for the last two years which gets worse with PMS. I feel depressed and anxious and get severe body pain and it's come to the point where my marriage is being affected. Here are my results - my sister has hashi and all my siblings and my mother are on levothyroxine for underactive Thyroid.
Please can someone help me understand these results. I can see there is a problem with B12 levels. I shall post the Doctor's comments from Blue Horizons in the comments below. Thank you.
The Thyroid Stimulating Hormone (TSH) is elevated. If you are already taking a form of thyroxine, it is possible that that your dose is too low or that you have forgotten to take it on occasion. It may be that an increase in dose is in order - if adjusted it would be sensible to repeat thyroid function (TFT) testing in around 2 months’ time. If you are not taking thyroxine, and this is the first time TSH has been noted to be high, it is possible that 'non-thyroidal illness' or other medication effects are the cause of the elevation. It may be that hypothyroidism (underactive thyroid gland) is about to develop. In these scenarios, it would be advisable to repeat thyroid function tests in 3 months’ time. I would suggest undertaking this repeat test sooner if symptoms develop. The positive thyroid antibody result, however, increases the possibility of your having or ultimately developing autoimmune thyroid disease, such as Hashimoto's thyroiditis or Grave's disease.
The Vitamin B12 level is possibly insufficient. Although technically in range, some experts believe levels of 400-500 are desirable and that levels below this may lead to symptoms. Low Vitamin B12 levels can lead to Pernicious Anaemia (PA), a state of deficiency of the red blood cells in which there is reduced quality and number. Characteristically, the red blood cells are enlarged in this state (if the deficiency is severe and longstanding). Vitamin B12 is commonly found in many foods, particularly meats. Deficiency can develop if intake of the vitamin is reduced or if absorption from the gut is impaired. Poor absorption owing to a deficiency of Intrinsic Factor (IF) is the underlying reason for PA. Vitamin B12 deficiency in the longer run can lead to nervous system disorders - with sensation changes, loss of power or co-ordination, gut disorders and (rarely) dementia or mental illness. Lower level deficiency has been associated with a range of symptoms such as fatigue, memory impairment, irritability, depression and personality changes. Supplementation with Vitamin B12 is likely to be of benefit - please discuss this finding with your usual doctor.
From thyroiduk.org/tuk/about_the... here is some information that you should probably discuss with your GP, you could say that you have taken advice from NHS Choices recommended source of information regarding thyroid disorders (which is Thyroid UK but don't mention the internet or forums because they don't like that) and that these are the UK guidelines :
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.****
There is also the article in Pulse magazine (the doctor's magazine) written by Dr Toft, past president of the British Thyroid Association and leading endocrinologist, in which he says:
"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."****
You can obtain a copy of the article by emailing Dionne at tukadmin@thyroiduk.org print it and highlight question 2.
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Vitamin B12 236 pg/ml 197 - 771
This is too low. Check for signs of B12 deficiency here b12deficiency.info/signs-an... and I would be asking your GP for further testing for B12 deficiency/Pernicious Anaemia.
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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Folate (serum) 4.2 ug/L > 2.9
Although this is not below the limit, it is quite low. A good B Complex containing methylfolate will help raise it but don't start taking it until B12 investigations have been carried out and B12 supplementation in the form of B12 injections or otherwise has started.
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FERRITIN 13 ug/L 13 - 150
This is dire. You need to ask your GP to carry out an iron panel and a full blood count to see if there is iron deficiency anaemia. An iron infusion will raise your level within 24-48 hours so ask for one, tablets will take many months to raise it. 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 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...
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25 OH Vitamin D 56 nmol/L 50 - 200
This is too low. The Vit D Council recommends a level of 100-150nmol/L. Your GP wont prescribe anything for this level so you should buy your own D3 and as you have Hashi's then an oral spray is best for absorption. Look at BetterYou 3000iu and I suggest you take 6000iu daily for 6-8 weeks then reduce to 3000iu daily and retest 3 months after starting. Once you've reached the recommended level then you'll need a maintenance dose which may be 2000iu daily, maybe more or less, maybe less in summer than winter, 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 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
Thank you so much for taking time out to reply. I need to register with a new GP so not surely how long it will take to get an appointment. How long do you think it’ll take for the B12 investigations to take?
I'm sorry, I've not had anything to do with b12 investigated so I don't know. Did you check the signs and symptoms of B12 deficiency? If you have any then list them and give to your GP then suggest further investigation. It will be blood tests but I have no idea if they're back in a couple of days or if they take longer.
Completely agree with everything SeasideSusie said
Also you need to address the autoimmune aspect.
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels - clearly you are at this stage
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
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)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
OK update from the doctor. She's agreed to once a week B12 injections and 25mg of thyroxine. She said to start low so my body can get use to it. Also told me to take iron tablets but didn't say which ones. She said let's deal one thing at a time. I had another blood test done in relation to surgery I need for something else and those blood tests say I'm not anemic. Can you have low ferritin levels and not be anemic?
Good that she's doing B12 injections. How many? Is she doing loading doses then following on with 3-monthly jabs?
You can start the B Complex after you've started the injections.
You could have been started on 50mcg Levo unless you're elderly or have heart problems. Make sure you are retested in 6 weeks' time, 25mcg increase, retest after another 6 weeks, 25mcg increase, repeat until levels are where they need to be for you to feel well.
Also told me to take iron tablets but didn't say which ones.
Not good enough. With your ferritin level you need a full blood count and iron panel to get the whole picture. If your serum iron was high it would be wrong to take iron tablets. Iron is complicated, it's much more than just ferritin and your GP should know this (then again .....!!)
Can you have low ferritin levels and not be anemic?
A full blood count would tell you that.
Check out this PDF to see what an iron panel can tell a doctor
and a full blood count will show your MCV and MCHC. If MCV is low and MCHC is high, along with a low ferritin level, then that suggests iron deficiency anaemia.
Your ferritin is right on the bottom of the range, 0.1 lower and you would be able to argue you are out of range. It needs further investigation not just "take iron tablets".
Thank you. B12 is one injection per week for 5 weeks. Not sure if this will continue. If they retest after 6 weeks will it include testing antibodies as generally even the labs don't test for these at the hospital.
The GP seemed a little overwhelmed by my letter which included blood results and symptoms checklist. She hadn't read it as requested prior to the appointment so I'm guessing I should make another appointment to get more time with her.
Been back for second appointment. Have 2 injections for 5 weeks. 300mg iron tablets and now told to go for blood test to check for all vitamins which I already had checked for £200! But results will be obscured as I've started taking meds/injections. The parietal cell/IF wasn't checked. I didn't mention coeliac disease as the GP thinks I might have fibromyalgia or rheumatoid problems. I don't understand why she couldn't just accept its hashi, B12 and Ferritin deficiency?
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