Help!

[PaulaGreene]

In the last few years I have put on a lot of weight on my stomach.. but have very slim arms and legs.

My waist is now 48 inches. I cannot wear anything that zips up etc around my waist.

I am normally a 32 inch waist.

I have had my pituitary gland looked at, and it is slightly enlarged, but nothing that much to worry about (according to the Dr).

I am on medication and my levels are Serum TSH level 4.55 mU/L

and Serum free T4 Level 14.6 pmpol/L

They have now increased my medication.

I also have PCOS

The doctor cannot offer me the full panel of tests, and has suggested that I go private. I really think I have Hashimotos of SIBO. I am having a test for SIBO in October on the NHS.. I really had to fight for it.

I did the Iodine test where you put a patch of iodine on your forearm, and if it disappears in an hour, it means your thyroid is crying out for insulin. The dr had never heard of it.! When I did the test, the iodine disappeared within an hour.

I just do not understand why the dr is only prepared to do these two tests

when there are quite a few other tests out there for thyroid.

Anyone else been through this please?

[jimh111]

Have you been checked for Cushing's syndrome? I don't have knowledge on the subject but I believe it can also trigger PCOS.

I would focus on causes other than thyroid because hypothyroidism doesn't cause this pattern of weight gain.

[PaulaGreene in reply to jimh111]

I have had an MRI which looked at my pituitary gland... they said it was slightly enlarged. but nothing out of the ordinary.

[jimh111 in reply to PaulaGreene]

It looks OK but could be malfunctioning.Cushing's can be very serious, given you have the signs it should be investigated. I would ask if you can be checked for Cushing's to rule it out.

People with Cushing's look like matchstick men and women. A large abdomen and bloated face with skinny arms and legs.

[tattybogle]

Hi paula , the most obvious issue is that you are undermedicated . GP's should be aiming to keep TSH around 1 , and some people need it a bit lower than that .... anything over 2/ 2.5 is a clear sign of undermedication. So it's good they have increased your dose .

get thyroid bloods retested after 6 wks on new dose.

Book early a.m. test to show highest TSH of the day , and don't take that day's levo dose until AFTER the test.

then if necessary , use this list of recommendations to get GP to increase dose further until you feel better:

healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-in-range-

(replies to that post have explanation of why Testing should be early am / fasting / 24 hrs from last dose levo)

This explanation may be helpful :

healthunlocked.com/thyroidu... the-shoe-size-analogy.

Re. Iodine : do plenty of research , the skin patch test is not a reliable test method , and supplementing iodine if not needed can cause problems . This post contains links to lots of info :

healthunlocked.com/thyroidu...

[PaulaGreene in reply to tattybogle]

Thank you.. I will look into this.

[SlowDragon Administrator]

How much levothyroxine were you taking and how long on this dose

What has dose now been increased to

Which brand of levothyroxine are you currently taking

Is it same as previous brand

Retest thyroid levels 6-8 weeks after any dose change (or brand change) in levothyroxine

ESSENTIAL to test vitamin D, folate, ferritin and B12

GP should also test thyroid antibodies at least once

If GP remains unhelpful can you see different GP

Or test privately in 6-8 weeks

all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[PaulaGreene in reply to SlowDragon]

thank you so much

[SlowDragon Administrator]

I did the Iodine test where you put a patch of iodine on your forearm, and if it disappears in an hour, it means your thyroid is crying out for insulin. The dr had never heard of it.! When I did the test, the iodine disappeared within an hour.

The iodine patch test is not recommended and is highly inaccurate

You’re taking levothyroxine, this contains all the iodine you need

PCOS and autoimmune thyroid disease (hashimoto’s ) are strongly linked

healthcentral.com/condition...

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

GP can and should test for PCOS

nhsinform.scot/healthy-livi....

High cortisol and PCOS

pcospathways.com/5-ways-to-...

veerahealth.com/hormones/co....

When under medicated for hypothyroidism cortisol is frequently high as adrenals try to compensate for lack of thyroid hormone

As your dose levothyroxine is increased you should see symptoms improve

[PaulaGreene in reply to SlowDragon]

Thank you

[RedApple Administrator]

As suggested by jimh111 Cushings does sound like a definite possibility.

Excessive and sudden (or at times more gradual) onset of weight gain around your trunk; your arms and legs may remain unchanged and can become quite thin compared to your body) pituitary.org.uk/informatio...

[Regenallotment Ambassador in reply to RedApple]

DiL friend was diagnosed coeliac first then Cushings, awaiting surgery now. Has been so poorly, poor kid only 21. I agree mentioning it is important to rule out 🌱

[EchoWS]

Hi -

I've have/had PCOS after chicken pox at 21. I think I was leaning towards hypothyroidism anyway though it took a long time before I was treated. Stick with the increased dose of levothyroxine (I assume that is what you are on) and get tested at the appropriate time. Your TSH should be lower and others would agree. If when doing the test for your Dr ask if they could do Free T3 and Free T4. They could say no but also could say yes. Asking about Cushings a good idea esp if increased symptoms. I suspected that as well in my search for diagnosis and definitely have abdominal obesity which hasn't budged.

[helen_m]

Hello, another alternative is sensitivity to gluten. Do you eat a gluten free diet? I had a reaction of bloating badly only on my stomach before I chose to go on a gluten free diet. You can get tested for coeliac disease but there is also a condition called non coeliac gluten intolerance or sensitivity. This second one doesn't damage the bowel but causes a lot of the same symptoms. Unfortunately coeliac disease or the gluten intolerance goes hand in hand with thyroid issues.Best,

Helen

[Regenallotment Ambassador]

Ask to check for acites too, said a-sy-tees. Lot’s of conditions cause it. It’s a good early indicator to have more investigations. 🌱