Getting nowhere with the GP: I have been visiting... - Thyroid UK

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Getting nowhere with the GP

MabelB profile image
13 Replies

I have been visiting my GP for almost a year with numerous symptoms. A little online research suggested a thyroid problem. I have gained over 3st quite quickly with no change to diet, my hair and eyebrows are thinning, I get numb fingers and toes, I am constantly fatigued, suffering depression, itchy and rashy skin, blood in urine and generally feel awful to name a few symptoms.

I had some blood tests done at Medichecks as all the GP has said about the tests they have done is that the results are within normal range. I simply have lost faith in the GP because they are fobbing me off.

Here are some of the results from my private test. I have just listed the thyroid results and the one that came back out of “normal” range.

Can anyone offer advice please?

TSH 2.67 (0.27-4.2)

Free Thyroxine 12.2 (12-22)

Free T3 5.01 (3.1-6.8)

HCT. 0.453. (0.33-0.45)

CRP. 6 (0-5)

A P 124 (35-104)

A T 39.6 (10-35)

Gamma GT 43 (6-42)

Globulin 35.5 (19-35)

TIBC 97.2 (41-77)

Ferritin 25.2 (13-150)

Cholesterol 6.59 (0-4.99)

LDL 4.16 (0-3)

Non HDL 5.2 (0-3.89)

B12 70.5 (25.1-165)

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MabelB
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SeasideSusie profile image
SeasideSusieRemembering

Hi MabelB

TSH 2.67 (0.27-4.2)

Free Thyroxine 12.2 (12-22)

This suggests to me that Central Hypothyroidism should be considered (please note I am not medically trained so this is not a diagnosis, it's a suggestion for your doctor to look into). This is where the problem lies with the hypothalamus or the pituitary rather than a problem with the thyroid gland. With Central Hypothyroidism the TSH can be low, normal or slightly raised, and the FT4 will be low.

TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In Primary Hypothyroidism the TSH will be high. If there is enough hormone then there's no need for the pituitary to send the message to the thyroid so TSH remains low.

However, with Central Hypothyroidism the signal isn't getting through for whatever reason. It could be due to a problem with the pituitary (Secondary Hypothyroidism) or the hypothalamus (Tertiary Hypothyroidism).

Your GP can look at BMJ Best Practice for information - here is something you can read without needing to be subscribed bestpractice.bmj.com/topics... and another article which explains it ncbi.nlm.nih.gov/pmc/articl... You could do some more research, print out anything that may help and show your GP.

As Central Hypothyroidism isn't as common as Primary Hypothyroidism it's likely that your GP hasn't come across it before. You may need to be referred to an endocrinologist. If so then please make absolutely sure that it is a thyroid specialist that you see. Most endos are diabetes specialists and know little about the thyroid gland (they like to think they do and very often end up making us much more unwell that we were before seeing them). You can email Dionne at

tukadmin@thyroiduk.org

for the list of thyroid friendly endos. Then ask on the forum for feedback on any that you can get to. Then if your GP refers you, make sure it is to one recommended here. It's no guarantee that they will understand Central Hypothyroidism but it's better than seeing a diabetes specialist. You could also ask on the forum if anyone has been successful in getting a diagnosis of Central Hypothyroidism, possibly in your area which you'll have to mention of course.

As for your other results - did you have thyroid antibodies checked - Thyroid Peroxidase (TPO) and Thyroglobulin (TG)?

CRP is slightly raised, this is a non-specific inflammation marker. If it continues to be raised then your GP should investigate the cause.

TIBC 97.2 (41-77)

Ferritin 25.2 (13-150)

Do you have the rest of the iron panel - serum iron and % saturation? And a full blood count?

Raised TIBC can suggest iron deficiency anaemia, as can low ferritin, but you'd need the other tests to confirm this.

B12 70.5 (25.1-165)

This is just 0.5 over the level where it's recommended to test for B12 deficiency (that's <70). Do you have any signs/symptoms of B12 deficiency - check here b12deficiency.info/signs-an... If so you should ask your GP to test for B12 deficiency/Pernicious Anaemia.

Was Folate tested as well as B12?

Did you have Vit D tested?

Cholesterol can be raised where hypothyroidism is present.

I can't comment on the other tests.

MabelB profile image
MabelB in reply to SeasideSusie

Thank you for taking time to respond. Your info is very useful. I do have some symptoms of B12 deficiency. I have low blood pressure and am prone to dizzy spells and faints. I get restless legs at night and terrible shin splints when walking.

I didn’t get the thyroid antibodies checked, it wasn’t included in the well woman ultravit package from Medichecks.

Here are some of the other results you mentioned:

Iron 20.4 (6.6-26)

TIBC 97.2 (41-77)

Transferrin saturation 20.99% (20-55)

Ferritin 25.2 (13-150)

Active B12 70.5 (25.1-165)

Folate (serum) 2.08 (2.91-50)

25 OH Vitamin D 43.2 (50-200)

I am just so fed up with feeling terrible and not being taken seriously at the doctors because they seem to put my symptoms down to depression. They just prescribe antidepressants.

SeasideSusie profile image
SeasideSusieRemembering in reply to MabelB

Mabel

Iron is complicated, I don't begin to understand it, I just know where the optimal levels should be.

Ferritin 25.2 (13-150) - this is on the low side and can suggest iron deficiency anaemia. 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 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...

Iron 20.4 (6.6-26)

- serum iron should be 55%-70% through range (higher end for men) so yours is a little on the high side and doesn't indicate any need to supplement (which is at odds with the rest of your results)

TIBC 97.2 (41-77) - high TIBC usually means low levels of iron in the blood (iron deficiency), so this doesn't correspond with your serum iron level above.

Transferrin saturation 20.99% (20-55)

- optimal is 35%-45% (higher end for men), so this is low and again could point to iron deficiency.

Were there any comments from Medichecks?

Active B12 70.5 (25.1-165)

B12 has already been mentioned and as you have some signs of B12 deficiency you should ask your GP for further investigation into B12 deficiency/pernicious anaemia. Do not supplement any B12 until further tests have been carried out.

Folate (serum) 2.08 (2.91-50)

Folate is below range, therefore deficient. Your GP should prescribe folic acid but don't start taking this until investigations into B12 have taken place as folic acid masks B12 deficiency.

25 OH Vitamin D 43.2 (50-200)

The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L. If your GP was willing to prescribe anything, it would probably only be 800iu D3 daily which isn't enough, so it's best to buy your own.

For your level of 43.2nmol/L (17.28ng/ml) the Vit D Council recommends

vitamindcouncil.org/i-teste...

My level is between 10-20 ng/ml

To achieve 100nmol/L take 3200 IU D3 daily

To achieve 125nmol/L take 4900 IU D3 daily

To achieve 150nmol/L take 7000 IU D3 daily

As your level is so low, and we can't make D3 naturally during the winter months, personally I would aim for the higher end of the recommended range and take 5000iu daily for 3 months then retest.

When 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 as recommended by the Vit D Council -

vitamindcouncil.org/about-v...

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 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.

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. 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

naturalnews.com/046401_magn...

Check out the other cofactors too.

A good D3 softgel is Doctor's best, a good K2-MK7 is Healthy Origins. Both contain extra virgin olive oil to help with absorption, and there are no unnecessary ingredients.

Don't start supplements all at the same time, stagger them. Start with one, give it a week or two and if no adverse reaction then add in the second one, give it another week or two and if no reaction add in the next one, etc. By doing it this way, if you do have any reaction you will know what caused it.

Optimising all your nutrient levels may help, but there is still the possibility that you could have Central Hypothyroidism as mentioned in my previous reply. I would supplement for 3 months and retest, see if your levels have improved, see what your thyroid levels are like then, if still very low FT4 I would pursue the suggestion of Central Hypothyroidism if you haven't already discussed this with your GP.

MabelB profile image
MabelB in reply to SeasideSusie

Thank you again. Lots of good information. I am just about to visit my gp for more blood tests. I will discuss these things with them.

SeasideSusie profile image
SeasideSusieRemembering in reply to MabelB

Mabel

Be aware that doctors aren't taught nutrition, so as far as they are concerned any result that comes anywhere within the range, even scraping in by 1 point at the bottom is fine by them, they don't understand the concept of optimal and don't understand the need for Hypo patients to have optimal levels. Be prepared for anything you say about this to be poo-poo'ed.

MabelB profile image
MabelB in reply to SeasideSusie

As it turns out, the appointment was only with the nurse to take more bloods.

SeasideSusie profile image
SeasideSusieRemembering in reply to MabelB

Was that for thyroid tests? Hopefully not because they need to be done first appointment of the morning with an overnight fast - delaying breakfast until after the blood draw but water allowed.

MabelB profile image
MabelB in reply to SeasideSusie

I’m not actually sure what they’re testing. The nurse was very busy so extremely quick and I was ushered out with the only info being, “it’s just some tests one of the gps have requested. They’ll discuss it with you once the results are back”.

SeasideSusie profile image
SeasideSusieRemembering in reply to MabelB

That is so wrong. To do any procedure they must have our informed consent, therefore you should be informed of what they are doing.

MabelB profile image
MabelB in reply to SeasideSusie

So to follow up, I had some bloods taken last week and the doctor telephoned me on Friday to say everything was within normal range except Vit D (prescribed a high dose now). I asked about the thyroid and cholesterol tests but apparently they didn't test those. So, another trip to the nurse on Monday for more blood taken. I asked the nurse about the last results and could I have a print out. I was told they were all normal and the system doesn't let them print results. Telephone call on Tuesday to say that the thyroid and cholesterol were fine. When I pressed further I was told they were borderline and I would be checked again in 6 months. I mentioned the private tests and the doctor said that I shouldn't take much notice of those as they're not accurate and calibrated.

Still no further and becoming more depressed and overweight!

SeasideSusie profile image
SeasideSusieRemembering in reply to MabelB

Mabel

I asked the nurse about the last results and could I have a print out. I was told they were all normal and the system doesn't let them print results

I think you are being fed a load of BS. So call their bluff.

Pop along to the surgery, ask again for a print out. If you've given the same reply, ask to see the screen and if your phone takes photos then take a photo of your results. Or write them down yourself and include the reference ranges. Don't let the receptionist write them down - mistakes can be made.

If you are in England, all surgeries are supposed to offer online access to test results, some do, some are dragging their feet.

And you can also remind them that they are breaking the law by not providing your test results, we are legally entitled to them.

LAHs profile image
LAHs in reply to SeasideSusie

Hi SsS, I was happy to read that you think iron is complicated! I tried to dive into someone's iron problem once and just had to give up, wow, it's far harder than the endocrine process and that's saying something.

pgdw profile image
pgdw

I was ignored like you for 7 years until my TSH climbed over 10 and after another year a different GP commented on it by chance. There is a Very good chance you are heading there too!

If you have thyroid symptoms, a "normal" TSH level, but haven't been tested for thyroid antibodies, insist on having the test done by your GP. Personally mine refused as the NHS computer said "NO" and refused to refer me to an endo for the same reasi. In desperation I asked for a private referral as I read they should not be able to refuse this.

If you have thyroid symptoms, a "normal" TSH level, and elevated thyroid antibodies, consider asking for treatment, and if your physician is unwilling, consider finding a more knowledgeable or open-minded doctor or go private if you can. My private endo asked my GP to the the tests on the NHS.

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