Going round in circles...: Good afternoon, In the... - Thyroid UK

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Going round in circles...

AlisonMox profile image
20 Replies

Good afternoon, In the last 7 or so years Ive felt dreadful on and off ...I have been diagnosed with Vit D Def , Anaemia, High Cholesterol, I have bilateral parotid gland swelling, have lost most of my eyebrows, am constipated, my skin flakes off Im exhausted and have put on weight, Ive been given beta blockers for anxiety and antidepressants. My last two TFT have been T4 11.4 TSH 2.9 and T4 12.4 TSH 2.8, Am I going crazy to think that these are all related to a failing thyroid? Ive seen a less than helpful Endo who says Im still within normal range for Thyroid, and is happier giving me Metformin, Statins, Vitamin D and Iron, to go with my Beta Blockers and Antidepressants! Ive got no family history of high cholesterol, I exercise regularly and trying everything I can to help myself including getting through tubes of hydrocortisone. Ive been tested for Sjogrens (negative) as Ive developed problems with my joints and pain in my muscles....Help PLEASE!!

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AlisonMox
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SeasideSusie profile image
SeasideSusieRemembering

Alison

Can you give the reference ranges for your test results please.

Also, what are your vitamin/mineral levels and what are you supplementing with?

AlisonMox profile image
AlisonMox in reply to SeasideSusie

T4 Ref Range 12-22 TSH 0.27-4.0

SeasideSusie profile image
SeasideSusieRemembering in reply to AlisonMox

FT4 11.4 (12-22)

TSH 2.9 (0.27-4.0)

FT4 12.4 (12-22)

TSH 2.8 (0.27-4.0)

In that case you have had an under range FT4 plus one barely in range. I agree with Reallyfedup that you should be investigated for Central Hypothyroidism. This is where the problem is not with the thyroid but with either the Pituitary (Secondary Hypothyroidism) or the Hypothalamus (Tertiary Hypothyroidism). In this case the TSH can be low, normal or slightly elevated and the FT4 will be low.

A couple of articles

bestpractice.bmj.com/topics... - Go to Summary and click on Read More

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.

And what about your vitamin and mineral levels and what you're supplementing with?

AlisonMox profile image
AlisonMox in reply to SeasideSusie

My vit D is now normal on 1000iug daily supplement and my anaemia was treated with Ferratin..I take Bergamot Meta daily as well as Mega Apple Cider Vinegar supplement along with Fish Oil with Omega 3 to try and bring my cholesterol down.

SeasideSusie profile image
SeasideSusieRemembering in reply to AlisonMox

What is your "normal" Vit D level? It's crucial to know that to see whether you are supplementing at the correct dose. Can you please post your level and say if the unit of measurement is nmol/L or ng/ml.

Are you taking D3's important cofactors - magnesium and Vit K2-MK7?

Have you had a recent full blood count and is your MCV and MCHC/MCH all in range, thus showing no more anaemia?

What is your current ferritin level? It needs to be a minimum of 70 for thyroid hormone to work, and for females 100-130 is often recommended.

I don't know what Bergamot Meta is or what it is supposed to do.

Why the hydrocortisone?

AlisonMox profile image
AlisonMox in reply to SeasideSusie

My anaemia and Vit D all now normal...Bergamot is to treat cholesterol, there has been some good research on this, the hydrocortisone is for my dry flaking skin. My MCV MCH etc all now within range. Thanks

SeasideSusie profile image
SeasideSusieRemembering in reply to AlisonMox

Questions are being asked so we can try and help. I will have to repeat, what is your "normal" Vit D level? It's crucial to know that to see whether you are supplementing at the correct dose. Can you please post your level and say if the unit of measurement is nmol/L or ng/ml.

Just because it's somewhere within the range, therefore "normal", it's essential to know where. The Vit D Council has recommended levels and Vit D generally comes in categories such as Deficient, Insufficient, Sufficient, etc.

If you supplement too little you may be below the recommened level. If you supplement too much then excess gets stored and can cause problems.

And are you taking D3's important cofactors?

You said you are getting through tubes of hydrocortisone. Is this prescribed? As hydrocortisone is a steroid then that could be mucking up your other hormones, and it can also cause thinning of the skin.

greygoose profile image
greygoose in reply to AlisonMox

Oh! Hydrocortisone cream! You had me worried there, for a minute! I thought you meant pills. lol

Your dry and flaking skin is to do with your low thyroid hormones, as are all the rest of your problems : anemia, high cholesterol, depression, etc. If you were on the right dose of thyroid hormone replacement, you wouldn't need all those pills and potions.

You certainly shouldn't be on statins, anyway, they are not recommended when you are hypo, nor are they recommended for women. High cholesterol is a symptom of low T3. As your T3 rises, the cholesterol lowers. But, it's not a problem, anyway, it won't give you a heart attack or cause a stroke. But, on the other hand, the statins might! You do not need them.

If you lower your cholesterol, you will also lower your sex hormones. Your hormones are already unbalanced, the statins will just make it worse. I wish doctors understood more about these things, and stopped filling hypos with dangerous drugs they do not need.

I agree with Susie about Central Hypo. But, I don't suppose your doctor has ever heard of it. :(

AlisonMox profile image
AlisonMox in reply to greygoose

I refuse to take the statins which is why I take the Bergamot and Apple Cider Vinegar.. I exercise and try to watch my diet, weight loss is very very slow but I just keep battling..I just know I could kick the Metformin too if my cholesterol (triglycerides came down) my blood glucose is normal, Im not type 2. As for Libido, forget it! If Im not sleeping or tearful Im in a general fog....:(

greygoose profile image
greygoose in reply to AlisonMox

Sorry, I'm confused. What has Metformin to do with cholesterol? I didn't know it had anything to do with it. In any case, as I said, you don't need to lower your cholesterol, it's not a problem. It's a symptom, not a disease. And it certainly has nothing to do with diet. Cholesterol is made in the liver. And it's made in the liver for a reason : your body needs it!

Be careful with the exercise. It taxes your T3 and makes you more hypo. As you don't even know what your FT3 is, I would give up the exercise until you do, if I were you. Just gentle walking. The reason for you weight-gain is low T3, I would imagine, not lack of exercise.

Low T3 also causes lack of libido. But, I wasn't even thinking about that when I said statins will lower your sex hormones. Sex hormones aren't just about sex! Low testosterone, for example, will also make you put on weight.

AlisonMox profile image
AlisonMox in reply to greygoose

The Endo gave me metformin because she said I had a picture of Insulin Resistance....?

greygoose profile image
greygoose in reply to AlisonMox

Well, if I were you, I'd do my own research. I do not trust endos. And, doctors in general just love to load you up with useless drugs - not surprising the NHS is going bankrupt!

AlisonMox profile image
AlisonMox in reply to greygoose

Ok I have found a previous sex hormone profile...my testosterone was 0.6, my gynaecologist started me on Testosterone Patches, (2014) also Transanemic Acid for heavy periods and also Iron because my HB was 10.4. I no longer have the patches, or the anaemia, and now have a mirena coil. All of this I feel could have been avoided if I had been properly diagnosed, the endo I saw at the time says in her letter, "TSH 11.4, I could try her on 25mcg of Thyroxin per day but I doubt she would feel any benefit" I want to scream...so basically, I have had iron, sex hormones, metformin, statins, cream for dry skin, medication for heavy periods, PPIs for reflux, laxatives for constipation, everything else except Thyroxin.

greygoose profile image
greygoose in reply to AlisonMox

That is unbelievable! Why on earth would she not think you'd feel any benefit? She knows nothing about thyroid!

AlisonMox profile image
AlisonMox

They did not test for T3....

lilliput profile image
lilliput

Check the side effects of these meds May give you some leverage Your endo should have checked T3

lilliput profile image
lilliput in reply to lilliput

Plus agree with strange TSH/T4 ratio

AlisonMox profile image
AlisonMox

Ive looked at the possibility of central hypothyroidism...and Ive been googling since chatting here, it certainly seems to fit. Im going to make an appointment with a Doctor on the Thyroid UK list ASAP for a second opinion. Thanks for your comments and I will post the outcome of my consultation.

greygoose profile image
greygoose in reply to AlisonMox

Don't forget to ask him about the Metformin!

AlisonMox profile image
AlisonMox

My Cholesterol is Triglycerides 3.4 Cholesterol 6.8 LDL/HDL Ratio 5.67

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