Hashis and fed up.!!

[Alley27]

I went to see the ENT doc last Thursday to firstly get results from the fine needle aspiration he did 3 weeks before. He kindly told me that here were only lots of inflammatory cells In it, and that I also have a goitre developing. His solution, is to re send me to see the endo, telling her that in his opinion there is scope to try a small dose of levo to try and shrink the nodule that is quite large (need to eat soft diet). Also the fact I cannot have anti-inflammatory meds due to my damaged liver, and I am already on steroids, which is the usual way they treat painful nodule.

I have had no treatment in the past 20 years for my hashis and I am so symptomatic...He did listen to me when I said I am freezing cold all the time, I am constipated all the time, my skin is very pale, my hair is dry and falling out, I have no hair under my arm pits, I am so tired I have to be in bed by 9pm, and then can't sleep, and I can't get up in a morning; my heart races and I often get palpitations and then there's this headache that seems never ending.....on and on...my feet are so stiff on a morning I can't walk, my hubby or son have to help me get to the loo, not a very nice picture.

I said ok, if you send me to see the endo again I will spoil my manners because they do not listen to anyone, they only look at papers and test results....they will send me home without treatment yet again. I have had this hashis for around 21 years and it has never been treated....I said and there's ALL the unnecessary medication my Gp has prescribed for me over the years rather than treat the underlying cause, not forgetting there is a direct link between hashis and autoimmune liver disease ( I have two), and I feel unwell all the time, I just want to be well.

I mentioned the fact that if it is left untreated there is risk to my heart and not forgetting the link to thyroid cancer. This nodule which by the way makes 4 is painful and annoying.

He actually listened to me after I said that I though it was a doctors job to treat their patient as a whole. He said he understands how frustrating it must be for me and actually agreed that if the endo says they can't do anything for me, he will call me back in and we will discuss my options in view to surgery to remove the goitre, and thyroid if the nodule has not gone away.

I live in hope. I wonder after all these years of fighting and getting nowhere, I finally might get the help I so dreadfully need.

Kind Regards

conniefusedxx

[shaws Administrator]

Hi conniefused

I'm sorry you are another who appears to have been let down by the NHS as regards a thyroid gland problem.

I have hypo so am not au fait with all the other thyroid gland problems. I believe Hashi's develops when you have antibodies and have 'ups and downs' in activity. This is an excerpt from Dr Toft of the British Thyroid Association in his article in Pulse Online, maybe it should have applied to you. You do sound very hypo with your clinical symptoms.

Extract from Pulse Online:-

2. I often see patients who have an elevated TSH but normal T4. How should I be managing them?

The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat the thyroid function tests in two or three months in case the abnormality represents a resolving thyroiditis.

But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive – indicative of underlying autoimmune thyroid disease – the patient should be considered to have the mildest form of hypothyroidism.

In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow-up.

Treatment should be started with levothyroxine in a dose sufficient to restore serum TSH to the lower part of its reference range. Levothyroxine in a dose of 75-100µg daily will usually be enough.

[Alley27]

Thank you for your reply, I have copied the information down and tomorrow I am going to attempt to get an appointment with my Gp. I am going to explain to her what the ENT person said and ask outright for a trial run with levo. I can only ask and see.

I also wondered if you knew anything about how long term usage of steroids affected hormones in our bodies. We know that when we take steroids long term, they affect our adrenals...they take over the job our adrenals are supposed to do. I am positive they do the same with other hormones in our bodies.

I went to see this endo; who the ENT wants to send me back to in May last year. Bearing in mind I also have AIH and PBC ( two autoimmune liver diseases) and at that time I had been taking steroid for about a year. My liver consultant and I was trying to drop the steroid dose and the day of my endo apt, I had been off steroids completely for 4 weeks. I was rather unwell on that day, extremely tired and thirsty. I had bloods done and the result came back T3 toxicosis and completely supressed TSH. The following week (3 days later), I went to see my liver doc and I was put back on high dose steroids because my liver was inflamed again. I then had to do a second blood test for the endo and those came back in normal range; I had been back on steroids for 7 days at this point.

I am considering waiting for my endo appointment and stopping my steroids a week before. I know there is some risk, but I will do a week of high steroids to assist my liver afterwards if needed. I will do the same again at the follow up blood, because if there is something wrong with my bloods, they will definitely do another test...because let's face it, the tests are like god to them...I just wondered that's all.

xxconniefused.

[Clutter]

Why not take the blood tests on & off steroids to the endo to demonstrate the effects steroids have on your TFT rather than risk upsetting your liver function?