Overactive thyroid from hypothyroid to Graves. Please someone help me to understand

[Julie7741]

Hi could someone please help advise. I had FT4 *40.5 (12 - 22) FT3 *9.3 (3.1 - 6.8) TSH *<0.02 (0.27 - 4.20) in August last year. I have hypothyroid diagnosed 2011. I am very shocked at these results. Symptoms - constipation, joint pains, dry skin, puffy eyes and swollen neck, dry eyes, heavy periods and weight gain and cold intolerance. Advice welcome thankyou

[Julie7741]

By the looks of things I need anti thyroid meds and not levothyroxine, no?

[SeasideSusie Remembering in reply to Julie7741]

No. If you were diagnosed hypothyroid in 2011 and have been on Levo then you are hypothyroid and don't need anti-thyroid meds.

Do you have your results from when you were diagnosed?

Have you been having regular annual blood tests with your GP surgery? Do you have any results of these tests? Can you post them, with their reference ranges and say what dose of Levo you were on.

What is your current dose that produced the results posted above?

Have you had thyroid antibodies tested? We're they raised?

Have you had vitamins and minerals tested :

Vit D

B12

Folate

Ferritin

Please post any results from these tests, say if you are supplementing, how long for and the dose.

[Julie7741 in reply to SeasideSusie]

TSH 55 (0.2 - 4.2)

FT4 10.6 (12 - 22)

On diagnosis

[SeasideSusie Remembering in reply to Julie7741]

Then there is no doubt, that is primary hypothyroidism.

[Julie7741 in reply to SeasideSusie]

Not on thyroid meds and was not thyroid meds at time of bloods. I get bloods every 6 - 8 weeks

[SeasideSusie Remembering in reply to Julie7741]

Why are you getting bloods tested every 6-8 weeks?

Why were you not on Thyroid meds at time of test?

Can you answer those other questions in my first reply ease so that we can try and under what is going on.

[Julie7741 in reply to SeasideSusie]

Thankyou I had overmedicated symptoms the time before in Nov 2016 and my TSH was 5.38 (0.2 - 4.2) FT4 13.8 (12 - 22) I was on 175mcg levothyroxine and I have had many abnormal bloods which needed repeating. I will post other results

[Angel_of_the_North in reply to Julie7741]

That shows undermedication!

[Julie7741]

Also skinny as well?

[Julie7741]

I have anaemia as well

[helvella Administrator Thyroid UK in reply to Julie7741]

What type of anaemia? I assume you mean iron-deficiency - but there are many anaemias.

[Julie7741 in reply to helvella]

Thankyou iron anaemia

[Julie7741]

Just so worried about taking any levothyroxine in case I overmedicate again

[SeasideSusie Remembering in reply to Julie7741]

If you answer the questions asked then maybe we can help.

[SeasideSusie Remembering]

If you are having bloods done every 6-8 weeks, you must have more recent results than those posted from August 2017. Please post your most recent results.

[Julie7741 in reply to SeasideSusie]

Dec 2017

TSH 4.9 (0.2 - 4.2)

FT4 14.7 (12 - 22)

FT3 3.6 (3.1 - 6.8)

Then above results

Jan 2017 on 175mcg levothyroxine

TSH 1.77 (0.2 - 4.2)

FT4 15.9 (12 - 22)

FT3 4.5 (3.1 - 6.8)

Nov 2016 on 175mcg levothyroxine

TSH was 5.38 (0.2 - 4.2)

FT4 13.8 (12 - 22)

Jul 2016 on 175mcg levothyroxine

TSH 3.86 (0.2 - 4.2)

FT4 17.2 (12 - 22)

FT3 4.6 (3.1 - 6.8)

[Angel_of_the_North in reply to Julie7741]

None of those results show overmedication. All under medicated as both frees were low in range. The aim is for free T4 and free T3 to be in the top quarters of their ranges and TSH wherever it ends up when that happens - usually under 1. A suppressed TSH can be a good way of mitigating antibody attacks.

[SeasideSusie Remembering]

Julie

Please answer these questions

Have you had thyroid antibodies tested? We're they raised?

Have you had vitamins and minerals tested :

Vit D

B12

Folate

Ferritin

Please post any results from these tests, say if you are supplementing, how long for and the dose.

**

You say you have anaemia. Presumably this has been diagnosed by your doctor or Haematologist so what treatment are you having?

**

"I had overmedicated symptoms the time before in Nov 2016 and my TSH was 5.38 (0.2 - 4.2) FT4 13.8 (12 - 22) I was on 175mcg levothyroxine"

Those results indicate undermedication. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be I the upper part of their reference range. What overmedicated symptoms were you experiencing?

**

"Dec 2017

TSH 4.9 (0.2 - 4.2)

FT4 14.7 (12 - 22)

FT3 3.6 (3.1 - 6.8)"

Those are hypothyroid results, your TSH is over range, you should be on Levo.

[Julie7741 in reply to SeasideSusie]

Thankyou I have had thyroid antibodies tested a few times, latest ones were

*Thyroid peroxidase antibodies 271 (<34)

*Thyroglobulin antibodies 508.5 (<115)

I had symptoms of sweating and tremor and weight loss and insomnia during undermedicated results

Not on treatment for anaemia since May 2017 but I had iron infusion in 2016

Vitamin and minerals in Dec 2017

Ferritin 47 (30 - 400)

Folate 2.3 (2.5 - 19.5)

Vitamin D 40.2 (50 - 75 suboptimal)

Vitamin B12 206 (180 - 900)

Only taking D3 800iu tablets since Nov 2014

[Greybeard]

Hi Julie, have you had your antibodies tested?

[SeasideSusie Remembering in reply to Greybeard]

Already asked that Greybeard but not been answered.

[Julie7741 in reply to Greybeard]

Thankyou I have had thyroid antibodies tested a few times, latest ones were

*Thyroid peroxidase antibodies 271 (<34)

*Thyroglobulin antibodies 508.5 (<115)

[greygoose in reply to Julie7741]

You have Hashi's, as I just said.

[Julie7741 in reply to greygoose]

Sorry

[Julie7741 in reply to greygoose]

Just trying to come to terms with what's happening to me

[greygoose]

Well, I think it's got to be Hashi's. With that original TSH, it can't be Grave's. You had a Hashi's flare in August 2017, and now you've gone back to being hypo. Therefore, you should be taking levo again, or you're going to make yourself ill.

[SeasideSusie Remembering]

Julie7741

*Thyroid peroxidase antibodies 271 (<34)

*Thyroglobulin antibodies 508.5 (<115)

There is your problem.

You do not have Graves disease and you do not have an overactive thyroid.

What you do have is autoimmune thyroiditis aka Hashimoto's as confirmed by those raised antibodies.

Hashimoto's is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.

You can have symptoms of hypothyroidism and hyper-type symptoms - hence your sweating, weight loss and insomnia whilst having undermedicated results.

Has your doctor ever mentioned autoimmune thyroiditis (they don't call it Hashimoto's)? Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

**

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies.

Not on treatment for anaemia since May 2017 but I had iron infusion in 2016

Have you had any recent tests - MCV, MCHC? Do they still show iron deficiency anaemia?

Were you under a Haematologist? If so did he say you should be referred back if ferritin fell below 50 (some of them do).

Ferritin 47 (30 - 400)

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 could ask your GP for iron tablets to help raise your level but unless you are confirmed anaemic again you may not get them with this level of ferritin. 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...

If you are prescribed iron tablets then take each one with 1000mg Vit C to aid absorption and help prevent constipation. Take iron 4 hours away from thyroid meds and 2 hours away from any other meds and supplements as it affects absorption.

**

Vitamin B12 206 (180 - 900)

Do you have any signs of B12 deficiency? b12deficiency.info/signs-an...

With your low level you should have intrinsic factor antibodies tested as you may have Pernicious Anaemia and you may need B12 injections.

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."

You need to discuss this low level of B12 with your GP.

**

Folate 2.3 (2.5 - 19.5)

You are folate deficient. You must also discuss this with your GP. B12 and folate work together. You should have further tests carried out for Pernicious Anaemia and start B12 before starting folic acid for your low folate level.

**

Vitamin D 40.2 (50 - 75 suboptimal)

Only taking D3 800iu tablets since Nov 2014

Presumably the 800iu D3 is prescribed? Do you know your original level back in 2014 when you were given this prescription?

800iu D3 isn't going to ever raise your level. It is hardly a maintenance dose for someone with a reasonable level.

Now your level is 40.2 you are unlikely to get a prescription for a higher amount from your GP so you will very likely have to buy your own so that you can raise your level.

The Vit D Council recommends a level of 100-150nmol/L. To achieve this you need to take around 10,000iu daily for 4 weeks then reduce to around 5000iu daily and retest in May, privately if necessary with a fingerprick blood spot test with City Assays vitamindtest.org.uk/

As you have Hashi's then for best absorption you should use an oral spray such as BetterYou. They do a 3000iu dose spray so you should take 9000iu daily to start with then reduce to 6000iu daily until retested. Once you reach the recommended level then you will need to find your maintenance dose which will be by trial and error. You may be OK on 2000iu daily, maybe more or less, so you should retest twice a year to keep within the recommended level.

There are important cofactors needed when taking D3

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.

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

naturalnews.com/046401_magn...

Check out the other cofactors too.

**

Because Hashi's trashes nutrients and causes gut problems, I will ask SlowDragon to comment as she has many links and much information about healing the gut and dealing with absorption problems.

[Julie7741 in reply to SeasideSusie]

Thankyou my endo told me I have Graves and thyrotoxicosis but never been told anything else.

MCHC in Dec 2017 was 355 (310 - 350) MCV 80.1 (80 - 98)

Vit D in 2014 was 43.1 (25 - 50 deficiency (25 - 50 deficiency)

I have symptoms of B12 deficiency

[SeasideSusie Remembering in reply to Julie7741]

my endo told me I have Graves and thyrotoxicosis but never been told anything else.

I believe your endo is a diabetes specialist (most of them are) and doesn't know much about thyroid disease.

Raised Thyroid Peroxidase (TPO) antibodies can be present in Graves disease, but you would also need TSI antibodies tested (Thyroid Stimulating Immunoglobulins). BUT you were diagnosed with primary hypothyroidism with a TSH of 55 and

FT4 below range at 10.6 so you cannot have Graves and your endo is showing his ignorance. You had "hyper" results due to a Hashi's antibody attack.

When the antibodies attack, the dying cells dump a load of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. These are called 'Hashi's flares' or 'swings'. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. Unless a GP/endo knows about Hashi's and these hyper type swings, then they panic and reduce or stop your thyroid meds.

The hyper swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return. Thyroid meds should then be adjusted again, increased until you are stable again.

This is your problem, not Graves disease.

**

MCHC in Dec 2017 was 355 (310 - 350) MCV 80.1 (80 - 98)

You are a gnat's whisker away from iron deficiency anaemia. If MCV was 79.9 with that MCHC level, that would confirm it. It is too close to ignore. Ask to be treated for the anaemia or referred back to your Haematologist if you saw one originally.

**

Vit D in 2014 was 43.1 (25 - 50 deficiency (25 - 50 deficiency)

If it had been below 30 you would have been prescribed loading doses of D3 totalling 300,000iu over a number of weeks. As it is, just follow the advice given in my previous post about what you should be taking dose-wise now for D3 and ensure you also take the cofactors.

**

I have symptoms of B12 deficiency

You can get further advice from the Pernicious Anaemia Society forum healthunlocked.com/pasoc (click FOLLOW to be able to post).

I would list all your symptoms then ask for appropriate testing from your GP, remember that folic acid must not be started before further testing and B12 injections.

[Greybeard]

Hi Julie you also need to resolve these results

Vitamin and minerals in Dec 2017

Ferritin 47 (30 - 400)

Folate 2.3 (2.5 - 19.5)

Vitamin D 40.2 (50 - 75 suboptimal)

Vitamin B12 206 (180 - 900)

Only taking D3 800iu tablets since Nov 2014

We only feel well when all our issues are resolved.

Many people find that adopting a glutten free diet helps to lower antibody levels and the frequency of flareups.

[SlowDragon Administrator]

Email Thyroid UK for list of recommended thyroid specialists

[e-mail]

[Angel_of_the_North]

If you were hypo, you are pretty unlikely to have Graves. It's not impossible, bu tit is much more likely that you have Hashimotos (Autoimmune thyroiditis) and have just had a Hashi flare where the dying thyroid dumps extra hormone into the blood stream - so your bloods show too high - before making you more hypo later. To have Graves, you must have positive TRAB or TSI antibodies, TPO is Hashis. It is possible to have Graves and Hashis together.