Newbie: Diagnosed hypothyroid in 2011, hello. If... - Thyroid UK

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S_Charli profile image
39 Replies

Diagnosed hypothyroid in 2011, hello. If I increase my Levo to 125mcg will I get overmedicated symptoms? My heart is thumping in my chest, finding it hard to sleep despite being tired, feeling cold, feet going numb, ears ringing.

Thanks

TSH 4.8 (0.2 - 4.2)

FT4 14.9 (12 - 22)

FT3 3.2 (3.1 - 6.8)

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S_Charli profile image
S_Charli
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39 Replies
SeasideSusie profile image
SeasideSusieRemembering

What dose are you currently taking?

Have you recently been given a different brand?

S_Charli profile image
S_Charli in reply toSeasideSusie

100mcg, taking Actavis

SeasideSusie profile image
SeasideSusieRemembering in reply toS_Charli

A 25mcg dose increase won't make you overmedicated with those results, your TSH is over range and free Ts very low in range.

Has your brand been changed? Sometimes the fillers in a different brand will be different and can cause side effects.

S_Charli profile image
S_Charli in reply toSeasideSusie

Yes I changed to Actavis after being on Teva for 5 months, used to be taking Actavis before

S_Charli profile image
S_Charli in reply toSeasideSusie

Changed to Actavis from Teva yesterday

SeasideSusie profile image
SeasideSusieRemembering in reply toS_Charli

Were those symptoms there when you were on the Teva brand or are they new symptoms that came on with Actavis?

S_Charli profile image
S_Charli in reply toSeasideSusie

Have always had them, also eyes feeling more puffy and getting more tired and breathless

SeasideSusie profile image
SeasideSusieRemembering in reply toS_Charli

I think your symptoms could be because you are undermedicated so it would make sense to increase dose by 25mcg.

It would also be a good idea to test Vit D, B12, folate and ferritin.

And if you felt better on one brand rather than the other then I would ask to have only that brand dispensed in future, it doesn't help to change brands. If your current pharmacy can't get the brand you want, take your prescription back and ring round pharmacies to see who can give you your preferred brand.

MULLIONAIRE profile image
MULLIONAIRE in reply toSeasideSusie

It does sound like the change of brand but if that doesn't work consider getting your adrenal (cortisol) levels checked. If you read the thyroxine patient leaflet you will understand the reason why. I was on thyroxine before it was discovered that I had low cortisol and on 125 mcg of thyroxine myself and others who have the same problem go into atrial fibrillation.

S_Charli profile image
S_Charli in reply toMULLIONAIRE

I have cortisol of 346 (140 - 700) and DHEA 2.2 (2.7 - 7.5)

MULLIONAIRE profile image
MULLIONAIRE in reply toS_Charli

Cortisol testing is very contentious. Personally, if you are concerned this may be the problem would have a private saliva test. The NHS won't take any notice of the results but you would then have to find a way to see an endocrinologist and make sure you had second line testing if the Short Synacthen Test came back as normal.

Definitely would follow the brand theory first.

S_Charli profile image
S_Charli in reply toMULLIONAIRE

I see an endo, he is not increasing dose and I am looking for a new one

S_Charli profile image
S_Charli in reply toMULLIONAIRE

Short synacthen test done by first endo, results ignored despite being low

S_Charli profile image
S_Charli in reply toSeasideSusie

They have been checked thanks

SeasideSusie profile image
SeasideSusieRemembering in reply toS_Charli

So what are the results? Are they optimal -

Vit D - 100-150nmol/L

B12 - very top of range

Folate - at least half way through range

Ferritin - minimum of 70

All need to be optimal for thyroid to work? If they aren't, what were the original results and what supplements have you been prescribed?

**

"Also he wants my levels to follow a trend and they don't......"

" TPO antibodies 696.5 (<34) TG antibodies 1300 (<115)"

Your levels won't follow a trend, you have autoimmune thyroiditis aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it, it causes fluctuations in symptoms and results. As your endo is a diabetes specialist he has very little understanding of Hypothyroidism/Hashi's so doesn't know how to treat you.

If you had put all this information in your first post it would have been very helpful, instead we have been drip fed bits and pieces after asking lots of questions.

S_Charli profile image
S_Charli in reply toSeasideSusie

Sorry I didn't mean to drip feed anyone but endo told me antibodies not relevant so did not include them

SeasideSusie profile image
SeasideSusieRemembering in reply toS_Charli

What about your vitamin and mineral results?

Hashi's causes gut and absorption problems and generally trashes nutrient levels. Doctors often ignore low levels (because they're 'in range' but that doesn't mean optimal) or they give too low a dose to help.

Vits and mins are so important, they're the building blocks. If you're not absorbing them they cause their own problems and your thyroid hormone can't work.

waveylines profile image
waveylines

Your result indicate that you are under medicated. Your GP should raise your dose. What did the GP say?

S_Charli profile image
S_Charli in reply towaveylines

Endo afraid to raise dose due to palpitations saying they are a sign of thyrotoxicosis

Saggyuk profile image
Saggyuk in reply toS_Charli

They can be caused by being hypothyroid too but most likely you have deficiencies also - iron/ferrtin, vit b12, Vit D or Folate - these can cause palpitations.

waveylines profile image
waveylines

Thats ridiculous! You can get palpitations when under medicated too!!! I guess this endo is a diabetic specialist and not thyroid? So many of them, do not understand Hypothyroidism.....

If he looked at your results and understood them he would see that your thyroid hormones are low and your TSH is too high. TSH needs to be under one & thyroid hormone need to be in top third or near the top of range. And that would tell him you are not at risk of being over medicated.....quite the contrary to what he is saying!!!

Id run from him & go elsewhere!

S_Charli profile image
S_Charli in reply towaveylines

Yes he specialises in diabetes

MULLIONAIRE profile image
MULLIONAIRE in reply toS_Charli

Find one that specialises in Pituitary problems.

S_Charli profile image
S_Charli in reply towaveylines

Also he wants my levels to follow a trend and they don't so that on top of palpitations means no increase

Angel_of_the_North profile image
Angel_of_the_North in reply toS_Charli

So how is he going to force your body to follow a trend that he has devised? The body just doesn't work like that. The only trend you've got there is worsening hypo (and that can cause heart disease) because of undermedication. I think you need to find another doctor as yours is only interested i keeping you ill.

eeng profile image
eeng

A heavy, slow, thumping heart is indicative of under-medication. A fast, uneven heartbeat may or may not be a sign of overmedication. Insomnia can be a sign of over or under medication. A norwegian study of thousands of healthy people showed that 95% of them have a TSH between 0.5 and 1.5. The TSH range is useful for diagnosis, not treatment. Your endo should be aiming to get your TSH into the range 0.5 to 1.5. A TSH of over 4 when you are being medicated will give you symptoms of hypothyroidism.

MULLIONAIRE profile image
MULLIONAIRE in reply toeeng

Agree all the results are low but in range, which could be the problem. Do your thyroid test results swing at all because that is another sign of cortisol deficiency?

Could you post the synacthen test results?

S_Charli profile image
S_Charli in reply toMULLIONAIRE

Yes thyroid levels do swing a lot

30 min cortisol 336

60 min cortisol 504

MULLIONAIRE profile image
MULLIONAIRE in reply toS_Charli

Have you got your base level, the one you had before you were injected with ACTH?

S_Charli profile image
S_Charli in reply toMULLIONAIRE

Baseline cortisol 204 (140 - 700)

MULLIONAIRE profile image
MULLIONAIRE in reply toS_Charli

Did you have the lab report for the results or a doctors printout? Labs do use different ranges so could always check their protocol. Could also email the Lab at Leeds because a few years ago they were involved with a Special Interest Group for this.

S_Charli profile image
S_Charli in reply toMULLIONAIRE

Lab report from endo, also TPO antibodies 696.5 (<34) TG antibodies 1300 (<115)

MULLIONAIRE profile image
MULLIONAIRE in reply toS_Charli

Hmm, your antibody results similar to mine - autoimmune. You definitely need to arm yourself with information and see a good consultant. It took me a long time to get diagnosed properly for my pituitary problems but the effort was worth it. Generally much better than I’ve been fo 30 years!

MULLIONAIRE profile image
MULLIONAIRE in reply toMULLIONAIRE

This is the protocol pathology.leedsth.nhs.uk/dn... . You will see that the result needs to rise by 200 and reach 600. Plus the timing of the test is imperative. Think you need to find an endocrinologist that specialises in Pituitary, then see your GP with the protocol and your results and aske to be referred to the consultant of your choice. Good luck.

eeng profile image
eeng

Absolutely not. Your endo is a sadist.

silverfox7 profile image
silverfox7

Definitely undermedicated. Your may not be aware but this site is recommended on NHS Choices forcthyroid dysfunction. It is run by Thyroid U.K. who have a very good site. Have a look on there for information re what your levels should be and anything else that will further your argument and point out to your doctor that this is the advice from a recommended site from the NHS!

There is also a huge list of symptoms,

Print that off and tick the ones you have and show him that!

waveylines profile image
waveylines in reply tosilverfox7

Wow Silverfox.....didnt know NHS Choices recommend this site! Yay! Is there light at the end of a dark dark tunnel?? 😊😊

silverfox7 profile image
silverfox7 in reply towaveylines

Yes hopefully light indeed. I had seen it myself on NHS Choices, checked it out before I recommended it but then a member said they couldn't find it, was really looking for Thyroid Uk so I asked for the proof and Louise kindly got in touch of where I could find it and that it's HealthUnlocked that is recommended which of course is overseen by Thyroid U.K! So excellent news that we are members of HU and that they are recommended by NHS Choices for thyroid dysfunction. As we know they put in a lot of work on our behalf re T3 and yes it's good news!

SlowDragon profile image
SlowDragonAdministrator

Your endo is clueless. About 90% of all hypothyroidism in Uk is due to Hashimoto's

you have high thyroid antibodies, so this is Hashimoto's also called autoimmune thyroid disease

Levels go up and down that's typical of Hashimoto's

Essential to test vitamin D, folate, ferritin and B12.

Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies and reduce swings in levels

Ask GP for coeliac blood test first along with vitamins

Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance

gluten.org/resources/health...

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

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