Hashis, swollen neck and round face, pulsating thyroid, fatique brain fog help!

[Corinne]

Hi

I have Hashis, and have had part of Thyroid removed, although on levothyroxine and back and forth to Endo, I haven't felt well for years, last summer had surgery to remove part of thyroid, and parathyroids and although helped with Bad Insomnia,I still have symptoms of Fatigue,poor sleep,anxiety and more recently pulsating Thyroid. I Have also gradually noticed that my face looks swollen and under my chin, especially when comparing to past photos! i look like i have a double chin!

I always thought I wasn't on the right treatment but keep hitting brick walls with GP and Endos and was basically told they could do no more and it was anxiety and depression related after surgery last year so have just got on with it.

But I feel increasingly worse and have been off work and then resigned and been on sick benefits for year and I just want to be normal and go back to work!!

Please can anyone help me, I had a thyroid test a few weeks ago GP said norm, am waiting for a print out of results, in meantime, has anyone been in similar situation, with same symptoms? that can help?

Thanks

Corinne

[RedApple]

Oh Corinne, sorry you're feeling so awful

Your description of 'round face' makes me ask the question... Have you been tested for Cushings Syndrome? It's a disorder of the adrenal glands.

Obviously this is just a suggestion and may not be relevant. But have a look here just in case

patient.co.uk/health/cushin...

[RedApple in reply to RedApple]

Sorry, i meant to add, scroll down the page until you see the heading 'What are the symptoms of Cushing's syndrome?', and see if anything rings bells with you.

[Corinne in reply to RedApple]

Hi

Checked the list of symptoms and have 6 of them, so is a possibility but also mimmick symptoms for hypo too.

[RedApple in reply to Corinne]

Hypo mimmicks symptoms of just about everything! That's part of the problem with getting correct diagnosis

Do post your last test results when you get them. Did they do an FT4 and FT3 test as well as TSH do you know?

Presumably you're on thyroxine - what dose?

[Corinne in reply to RedApple]

Hi

My GP test for just theTSH and FT4 and im on 100mg levothyroxine.

[RedApple in reply to Corinne]

Ok well there are a few possible things to explore, such as too low a dose, malabsorption of the thyroxine or your FT3 being too low, but we need results first and then we can go from there. Be sure to get the reference ranges along with the TSH and FT4 numbers

[Corinne in reply to RedApple]

Ok thanks I will X

[Corinne in reply to RedApple]

Hi Redapple

Got results of thyroid blood test.

freeT4 19.6 (12-22)

TSH 0.06 ( 0.4-4.0)

Can you tell me what you think please

Thanks

Corinne

[RedApple in reply to Corinne]

Hi Corinne,

Hmm, well this is not so easy as it might be Some people would be feeling good with those results. But, given your symptoms, I'm wondering if you might be over-dosed.

I'm not a medic, so can only tell you what I would do in your situation, which is to not take any thyroid medication for a day or two. Then, if you feel your symptoms starting to improve, it could be an indication that you need to reduce your dose, perhaps to 75mcg.

Does that make sense to you?

[RedApple in reply to RedApple]

I think it's important to remember that we're all different and what suits one won't necessarily suit another. You description of a pulsating thyroid does rings bells for me. I think I too experienced this when on too much thyroxine.

[Corinne in reply to RedApple]

Hi Red apple,

Thanks for your reply, I decided to not take my dose of 100mg levo yesterday, as I read on a online link about Thyroid problems on diff website about poss overdose and person had same symptoms of Anxiety, sleep probs , and other of my symptoms and I wondered if it could be too much levo.

Yesterday no pulsating Thyroid and today took 100 dose as norm and only had pulsating thyroid when had couple of strong coffees! so I think it could be over medication!

am seeing Dr tomoro so will suggest,

Thanks for your help x

[RedApple in reply to Corinne]

Glad you've felt a little improvement, and glad you're seeing GP tomorrow. I would definitely ask to have your prescription changed to accommodate a reduced dose.

Hopefully you'll be feeling much better soon. But if reducing the dose doesn't help enough, I would still follow up on the possible cortisol problem and request to see a different endo.

[Corinne in reply to RedApple]

Thanks,

Pulsating better yesterday, but don't know if spoke to soon as can see it visibly again, but probably need to take into account it will take a while to adjust to certain levels of medication.

On Endo front have had a look for another in my area and have found a couple names so hopefully GP will refer me.

My neck/chin are has been quite noticably swollen today in look and feeling, so hopefully will help towards referal, as I think sometimes more difficult to persuade GP on the basis of not visible symptoms!

x

[Corinne]

Hi Redapple

Thanks, Ive had a look, and previously I had cortisol tested (a key indication of Cushings)and was high but my Endo says I didnt have the common symptoms.

I have however made an apt to see my Gp, and will ask for cortisol to be checked again, only problem I think maybe for the next test according to the info on the link you posted, to confirm if it is Cushings , whats causing it i.e acth levels adrenals, pitituary problem because I would probably need to see my Endo and he was against doing further tests when my cortisol levels were high last time.

[RedApple in reply to Corinne]

Well high cortisol on a prior test does suggest we may be on the right track here, so definitely speak with your GP asap. And if you feel that the endo you saw previously isn't going to be helpful, then that's good enough reason to see a different one. Your GP may be able to help with suggesting another one, but if not, you could post here asking for an endo recommendation in your area.

[Corinne]

Hi

Thanks for your help, and I think I will try asking GP and find another Endo, but if anyone does know of an Endo in Colchester area I would really appreciate it!

[Hidden in reply to Corinne]

Hi Corinne - will PM x