I am quite unwell at the moment and I find my symptoms are only getting worse. I have had some blood tests come back which in my opinion are quite worrying yet doctors just say 'everything's fine, the results are normal'. I met with a private endocrinologist yesterday who was extremely unhelpful as he persisted that the results were 'fine' and there is no need for any action to be taken.
I have two sets of bloods one set was done in May and the other done recently in August. I would be extremely grateful for any advice or opinions about my blood results. I am new to this community but I think it is amazing and I have found it so helpful already.
Results from May:
TSH 1 (0.35-5.50)
T4 12 (10-20)
T3 4.8 (3.5-6.5)
Vit B12 607 (211-911)
Testosterone 1.3 (less than 1.6)
Results from August:
TSH 1.4 (0.35-5.50)
T4 13.7 (10-20)
T3 4.3 (3.5-6.5)
Vit B12 456 (211-911)
Ferratin 18 (10-291)
Vit D 62 (50-125)
Does anyone know of any good endocrinologists located in the North West UK? I am really struggling to find a good consultant.
Any advice or information would be appreciated.
Thank you,
Megan
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mld030306
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Both your May and August results suggest that you are undermedicated. Unfortunately all doctors look at is to see if your results are within their ranges, if they are they are satisfied and it doesn't matter if we have symptoms because as far as they are concerned the numbers tell them you are in range, your thyroid is fine therefore your symptoms can't be anything to do with your thyroid. How wrong they are and how ignorant!
First of all, do you always do your tests as we advise, it the only way to get accurate measures of normal circulating hormone and the only way you can compare results:
When doing thyroid tests, we advise:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
Also, do you take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected? Any other medication and supplements should be taken 2 hours away from Levo, some need 4 hours (iron, calcium, magnesium, Vit D, oestrogen, HRT, PPIs).
Do you always get the same brand of Levo each time your prescription is dispensed?
Taking your latest results:
TSH 1.4 (0.35-5.50)
T4 13.7 (10-20)
T3 4.3 (3.5-6.5)
The aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well.
Your TSH could be lower, your FT4 is only 37% through it's range and your FT3 is 30% through range, so they are pretty well balanced but far too low. You're looking at possibly around 17ish for FT4 and maybe 5.5ish for your FT3. So you could do with an increase in your dose of Levo.
You could ask your GP for an increase and use the following information to support your request but make sure that you also list any symptoms that you may be experiencing and tell him how your life is impacted by still feeling unwell and how it affects your relationships, etc.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional magazine for doctors):
"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).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing ThyroidUK:
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
**
Optimal nutrient levels are important for us Hypo patients and unfortunately yours are far from optimal.
Vit B12 456 (211-911)
Is the unit of measurement ng/L or pg/ml (they are both the same)?
If so then the following applies:
According to 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 if it is ng/L or pg/ml then you are looking to increase your level to a minimum of 550, preferably the top of the range.
Folate - you haven't given a result for this and it may not have been tested, B12 and folate work together.
However, I would look at supplementing with a good quality, bioavailable B Complex which will help raise your B12 and will also raise folate if low and maintain it if at a good level.
My suggestion is always Thorne Basic B, 1 capsule is probably enough. If you look at other brands then make sure they contain methylcobalamin (not cyanocobalamin) and methylfolate (not folic acid) and avoid any that contain Vit C as well, this is because Vit C keeps the body from using B12 and they should be taken 2 hurs apart.
**
Vit D 62 (50-125)
This is on the low side but not low enough for your GP to offer anything on prescription as it falls within the adequate category.
The Vit D Society and Grassroots Health recommend a level of 100-150nmol/L, with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L.
To reach the recommended level from your current level, you could supplement with 4,000iu D3 daily.
Retest after 3 months.
Once you've reached the recommended level then a maintenance dose will be needed to keep it there, 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. This can be done with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3. You will have to buy these yourself.
D3 aids absorption of calcium from food and Vit 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 such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.
For D3 I like Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.
For Vit K2-MK7 I like Vitabay or Vegavero brands which contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.
Magnesium helps D3 to work. We need magnesium so that the body utilises D3, it's required to convert Vit D into it's active form, and large doses of D3 can induce depletion of magnesium. So it's important we ensure we take magnesium when supplementing with D3.
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 if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.
Don't start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.
**
Ferratin 18 (10-291)
This is dire and if your GP hasn't already mentioned it then you should contact him to discuss and point out the following:
In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Your GP should do an iron panel which will show iron deficiency and a full blood count which will show if there is anaemia. He should treat accordingly and monitor your levels regularly. This is not something you should be treating yourself. Check the following symptoms and make sure you list them to discuss with your GP if you have any:
Symptoms of iron deficiency can mirror or coincide with those in thyroid disease. They include:
◾Persistent fatigue
◾Pale skin
◾Shortness of breath
◾Headaches
◾Dizziness
◾Heart palpitations
◾Dry skin
◾Brittle hair and hair loss
◾Swelling or soreness of the tongue or mouth
◾Restless legs
◾Brittle or ridged nails
Some experts say that the optimal ferritin level for thyroid function is between 90-110 ng/ml (but don't expect your GP to know this or even to agree with it, unfortunately).
PS - many members have been disappointed with their appointments with consultants, I would see what you can do with your GP first regarding an increase in your Levo and supplementing to achieve optimal nutrient levels before spending any money on a private endo, and an NHS endo will probably refuse a referral as your results are within range (and will probably be no better than your GP, most endos are diabetes specialists and have little or no knowledge of how to treat hypothyroidism).
OK, well if you're not already on Levo there's no chance you'll get a diagnosis, all I said about Dr Toft's article is no longer applicable I'm afraid.
My mum has hashimotos thyroid disease, is this genetic?
There's a high chance that you may also develop Hashimoto's. Have you had your antibodies tested? If not you could ask your GP but even if he agrees they only to one antibody test - Thyroid Peroxidase (TPO) whereas in fact there are two - TPO and Thyroid Peroxidase (Tg). You can have negative TPO antibodies but positive Tg antibodies but the NHS tends not to look at these. You can also have Hashi's without raised antibodies.
If GP wont test antibodies I would suggest that you do a private test that includes them with one of our recommended labs.
For a diagnosis of Primary Hypothyroidism we need a TSH over 10. When positive antibodies are present we may get a diagnosis when TSH goes over range, but you're a long way from that anyway.
For now I would work on your nutrients and bring them up to optimal levels. As for Ferritin, I'm sure your GP will say there's no problem because it's within range, but be persistent, bang on about the NICE Clinical Knowledge Summary saying below 30 is iron deficiency, don't give up and push for further testing regarding this. If he still resists then ask why does NICE say this, it's there in black and white so you want further testing.
Suggest you work on improving low vitamin levels, especially low ferritin which is really terrible
Do you have heavy periods?
Or vegetarian?
Likely to need iron supplements after GP does full iron panel test for anaemia
get FULL thyroid and vitamin testing done again in 2-3 months INCLUDING thyroid antibodies
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
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