Graves' and Hashimoto's: Hi, I have a rather... - Thyroid UK

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Graves' and Hashimoto's

PinkLizzie profile image
6 Replies

Hi,

I have a rather complex issue to cut things short I was first diagnosed hypothyroid with Hashimoto's antibodies was on thyroxine for 2 years then went thyrotoxic hyperthyroid with graves' antibodies eventually treated with carbimazole and thyroxine for 10 months.

I am now free from meds but have been having blood tests every 3 months since March this year. I have been told they are now stable and will retest in 6 months.

I am anaemic ferritin is 11, vit D is 68 my TPO haven't been retested as Dr thinks it's irrelevant now my thyroid levels are within the normal range. I have been discharged from the endocrine team also.

TSH is 3.1

FT4 is 10.9

FT3 is 3.1

I have gained weight, not eating much, unable to exercise as exhausted and out of breath. Any help, anyone in the same boat making me feel much less alone is much appreciated. Thank you x

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PurpleNails profile image
PurpleNailsAdministrator

“Dr thinks it's irrelevant now my thyroid levels are within the normal range”

They look very low by most ranges we see, but to be accurate we need the lab range for the test. Can you add please.

Is this a recent test?

Was blood draw for test taken in morning after fasting?

Do you take any supplements containing biotin?

Jazzw profile image
Jazzw

Hmm. How thyrotoxic did you get? How high did your FT4 and FT3 go?

Did your doctor do the right tests to diagnose Graves? It’s not uncommon for doctors to assume it’s Graves when it was in fact what we call a “Hashi’s flare”.

You’re looking more hypo now, which is more suggestive of Hashimoto’s.

Was TRAB tested?

Buddy195 profile image
Buddy195Administrator

I’m just checking if your initial Graves Disease (hyperthyroidism) was confirmed via positive TRab or TSI: 

TRab TSH receptor antibodies 

TSI Thyroid-Stimulating Immunoglobulin

The reason I ask is because I was initially diagnosed as Graves, mainly on ‘hyper’ symptoms but later antibodies showed Hashimotos. I do have thyroid eye disease (TED) often more common with Graves, but am definitely hypothyroid.

If you are unsure if you had positive TRab or TSI, do ask your GP for a copy of your medical records from this time.

SlowDragon profile image
SlowDragonAdministrator

your Ft4 and Ft3 look very low or below range….please add ranges on these

Being hypothyroid frequently causes low stomach acid levels and then poor nutrient absorption and low vitamin levels as direct result

You need vitamin D, folate and B12 levels tested

Request/insist GP tests

Plus coeliac blood test too if not already on strictly gluten free diet

you need full iron panel test for anaemia including ferritin

Likely to need at least iron supplements for months….possibly iron infusion

cks.nice.org.uk/topics/anae...

In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency

Also See page 7 on here 

rcn.org.uk/-/media/royal-co...

Look at increasing iron rich foods in diet 

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

An article that explains why Low ferritin and low thyroid levels are often linked 

preventmiscarriage.com/iron...

 

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin 

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin 

healthunlocked.com/thyroidu...

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron 

Medichecks iron panel test 

medichecks.com/products/iro...

Iron and thyroid link

healthunlocked.com/thyroidu...

Excellent article on iron and thyroid 

cambridge.org/core/journals...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms 

healthunlocked.com/thyroidu...

Here’s absolutely excellent reply by @humanbean

on iron and ferritin panel test results for another member 

healthunlocked.com/thyroidu...

Good explanations of iron 

theironclinic.com/iron-defi...

theironclinic.com/ironc/wp/...

Helpful info on iron infusion and supplements 

healthunlocked.com/thyroidu...

Zarahb profile image
Zarahb

Hello! I don't have anything more useful to add than the above advice but you mentioned people in the same boat and sometimes it's just nice to know there are others out there!

I'm the same age as you, but diagnosed the opposite way round. Diagnosed with Graves around 10 years ago. No mention of the likelihood of developing hashimotos, no guidance or advice (I would have made the nutrition changes I have made thanks to this wonderful forum and maybe avoided skin rashes, headaches, gut issues, internal shaking, etc). Carbimazole did seem to work for me (external signs said so anyway - hair grew back, lost weight) and sleeping patterns improved. Diagnosed with hashimotos 4 years ago and it's been a nightmare ever since. The small health gains I've made have been thanks to this forum and my own research.

Your vit D seems low to me, I use lipsomal vit D and vit K combined. It isn't cheap but I take so many supplements, and I'm not great with tablets, and I can't get on with the spray formats.

buddy195's advice seems good to me - your antibodies do need checking again for a proper diagnosis. I often wonder about the Graves > Hashimotos diagnosis, swings, flares etc. I had huge issues with levothyroxine in the first year and at one point stopped taking it as I felt suicidal and completely odd on it. That was an error, I admitted to my GP and apologised for being irresponsible. His response - don't take it if you don't like it...which is way more irresponsible than my misunderstanding of what levo does but his view appeared to be that as I have autoimmune disorders I could just take the medication as I felt like!

Best of luck, I often feel completely demotivated and apathetic about all of it. Having a body that doesn't respond to any of the 'normal' things I used to do - food, exercise, enjoyable activities - makes me feel detached from myself. I don't want to mention any of this to medical professionals though because of course they will assume depression and try to make this a mental health issue as opposed to dealing with the underlying causes

Bhattinsami profile image
Bhattinsami

hi I’m pretty much in the same situation . Was hypo and until last year GP said that my levels are now indicating hyperthyroidism as FT3 and FT4 were above normal and TSH WAS suppressed. Stopped taking levo thyroxine and referred me to endocrinologist. After taking carbimazole 5mcg for a month and the took 5mcg every alternate days the results came back in normal range . Endo repeated told me to stop taking any medications and repeated test after 8 weeks and all ranges were normal . So endo discharged me ..

I took few homeopathic medicines and zinc and vitamin d in all this period which helped me .

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