Hypothyroidism - Help Pls! Desperately seeking ... - Thyroid UK

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Hypothyroidism - Help Pls! Desperately seeking Answers..

gnlmd_82 profile image
11 Replies

Hi All,

I am new here and also relatively new to the world of Hypothyroidism, so apologies in advance for the long commentary.

About a year ago I was diagnosed with the condition and I was started on 50mcg of Levothyroxine.

At the time, I had very few bothersome symptoms; just fatigue, cold hands and feet and IBS, so the 50mcg seemed to do the trick and all was well.

However, in August of last year I developed a very bad ear infections and was prescribed 3 different weekly courses of antibiotics in order to treat the infection.

Since then I have been experiencing really poor health with my hypothyroid state from what I believe to be a combination of the antibiotics, the ear infections and the stress of the infection. I am now desperately trying to rectify this. Is it possible for Antibiotics to have an adverse effect on an underactive thyroid or Levo medication?

I have severe pins and needles in my head, face and throughout the rest of my body, as well as numbness at times. Joint and muscle aches, severe headaches and forehead pain on a daily basis, tinnitus, severe nasal congestion and post nasal drip, my nose is very cold and painful all of the time. I saw an ENT specialist who said I have enlarged turbinates but that should not be causing me so much pain!) My ears feel plugged and although I can hear OK they will not unblock when I try to unblock them, hair loss, swelling and tenderness in one side of my jaw, acne on my face, chest and shoulders, difficulty swallowing accompanied by clicking sounds in my ears, Insomnia...the list remains endless! The situation has left me really depressed and anxious and I spend the majority of my time researching medications, foods, therapies etc that may help me.

I have also been back to see my GP on several occasions in order to seek relief from at least some of these symptoms but so far prescribed nasal sprays, nasal drops and pain killers have had no impact whatsoever.

My thyroid function test in November 2017; TSH 0.43 (0.27 - 4.20)

T4 21.5 (10.50 - 24.50)

I am waiting for my latest blood results next week and managed to persuade my GP to test me for Antibodies as well this time (which he was hesitate to do). However over the phone I was told the TSH was 'satisfactory'.

Would an increased dose of Levothyroxine to 75mcg help eliminate some of the more debilitating symptoms like tinnitus, pins and needles and sensitivity in my head, cold and painful nose, headaches, joint pain etc?

Vitamins B12 supplements have not relieved the tinnitus in my case, although I have only taken them for a couple of weeks so far. I've also eliminated dairy, and started using coconut oil on my skin which has worked well for the acne and Seamoss and Bladderwrack for extra thyroid support in addition to the Levo.

Any advice or guidance would be greatly appreciated. The health professionals I have seen to date appear to be stumped which is really disappointing and disheartening. I do not know where else to turn!

Thank you so much in advance for your responses.

A very desperate Hypo!

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11 Replies
Marz profile image
Marz

Sorry to read you are struggling. Did you have the B12 tested before supplementing ? Which B12 are you taking and how much ?

Folate - Ferritin - VitD also need to be tested and for sure those pesky anti-bodies to rule out Hashimotos. Are you in a position to have Private Testing done at home ?

thyroiduk.org.uk/tuk/testin...

Special Offers with Medichecks are flagged up on Thursdays on the Forum.

VitD is anti-inflammatory so perhaps your levels are low - results need to be at least 100 if you are in the UK. Ferritin is a form of stored iron and low iron can be the cause of headaches. Ferritin and Folate need to be mid range. B12 needs to be over 500 - any results after supplementing will be skewed !

On treatment your TSH needs to be around 1 or under to feel well and the FT4 and FT3 in the upper part of the range - which your T4 is currently. So you need to know if your FT3 is also good - if not then you may need to address more than the B12. The Anti-bodies are TPO & Tg.

Are you taking folate/folic Acid with the B12 - they work together in the body.

Bladderwrack may well contain iodine which can be controversial with Hashimotos. there is iodine in your Levo/T4 medication.

Hope you soon feel better.

gnlmd_82 profile image
gnlmd_82 in reply to Marz

Thanks for your reply Marz.

I did not have my B12 levels tested before supplementing but currently take Holland and Barrett (500pg) tablets twice a day.

I haven't had my Folate, Ferritin or VitD tested either so would definitely consider the option of testing at home at this stage!

I'll also look into getting my FT3 levels checked asap, but wonder why my GP did not request this as standard as it all seems so interlinked! In addition, the lab seem to have sent back the TSH and T4 results but not the Antibodies results. Why is this? Also, does the Levothyroxine skew the antibodies results?

Will also look into folate and folic acid supplements as another option.

Thanks again!

Marz profile image
Marz in reply to gnlmd_82

Holland and Barrett - is that Cyanocobalamin ? Jarrow Methycobalamin 1000mcg or 5000 mcg are lozenges for B12 from Amazon - to be kept under the tongue until dissolved to avoid stomach issues ! Thorne Research do a good B complex which should cover the B9 or Folic Acid. Folate is the natural form of B9. A Complex will keep all the B's in balance. Do not supplement without testing would be my advice :-)

Did your GP request anti-bodies to be checked ? The NHS only do TPO and there is another Anti-Tg.

FT3 is not routinely checked - probably due to expense of testing and prescribing. Such a scandal. always have the FT4 and FT3 tested together to ensure you have good conversion.

gnlmd_82 profile image
gnlmd_82 in reply to Marz

It's Cyanocobalamin. I'll go back to my GP and request testing to see if I am actually deficient, and if so it sounds as though Methycobalamin may be a better bet alongside a good B complex.

I requested my anti - bodies to be checked as I wasn't should if the severe symptoms had worsened due to Hashi's.

Goodness - this is a mindfield! Will need to get FT3 checked quickly then.

Thanks for the advice it is really helpful Marz!

Marz profile image
Marz in reply to gnlmd_82

Once supplementing B12 of any type will skew results. So if you do test then do not allow your GP to day all is well. You need a result near the top of the range when Hypo. It takes months for B12 to come back to base. The test for B12 tells you what is circulating in the blood - both bound and unbound. Only around 20% of the result is available to travel to the cells where it is needed.

Have linked Testing websites above. It is the only way to get the correct testing - sadly.

greygoose profile image
greygoose

IMHO, the first thing you should do is stop the Seamoss and Bladderwrack. They are very high in iodine, and iodine is not recommended for hypos. It does not give support, it stimulates. Which might be ok for a short while. But, then it is anti-thyroid, meaning it lowers the amount of thyroid hormone your thyroid can produce.

Excess Iodine can also do other damage, such as exacerbating Hashi's, or triggering Hashi's if you don't already have it. It can even cause thyroid cancer. It is not, I repeat, not thyroid support.

As for B12 - and it does sound very much like a B12 deficiency - if you've been taking H&B cyanocobalamin, you won't have absorbed very much. So, before starting on the ones Marz suggests, get your doctor to test your B12 level. :)

gnlmd_82 profile image
gnlmd_82 in reply to greygoose

Oh dear! I'm a bit concerned about the Seamoss and Bladderwrack now as I thought they were helping with the deficiency. I'll speak to my GP about this also!

Definately going to get my B12 levels tested ASAP too.

Appreciate the advice and further guidance Greygoose.

greygoose profile image
greygoose in reply to gnlmd_82

Have you had your iodine tested, then, and found to be deficient? Even if you are deficient, it's not just a simple matter of taking seaweed. You need to be followed by a doctor who specialises in iodine, there are protocols to be put in place. Did your doctor tell you to take those tablets?

gnlmd_82 profile image
gnlmd_82 in reply to greygoose

My Iodine levels have not been tested as yet.

I'm must be misinformed.. I thought that taking Seamoss & bladderwrack capsules in small quantities helped.

The doctor has not really said much of anything other than I need to take Levothyroxine 50mcg. Even when I ask 101 questions, I do not seem to get much back, so I am due to see a different GP next week now in the hope that I'll be better supported.

greygoose profile image
greygoose in reply to gnlmd_82

Taking any form of iodine will only help if you are deficient to begin with - and if it's taken properly. More is definitely not better!

You probably don't get much information from your doctor, because he doesn't know very much. None of them do. That's why forums like this exist.

penny profile image
penny

I had ‘adult acne’ for over 30 years - until I was diagnosed hypothyroid and was given NDT by a private doctor, then it disappeared almost overnight (as did 14lbs of weight). All those years and I only needed thyroid replacement hormones.

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