Taking control of a poorly managed hashimoto's thyroiditis!

Hi, I'm ashamed to say I'm new to really understanding my condition so asking for any advice you have!

My history is.... I was diagnosed with hashimoto's thyroiditis after having the left side of my thyroid gland removed due to a benign tumour 10 years ago at the age of 24, due to the hashimoto's my right side could not compensate so I have been on increasing levothyroxine since then. It has been a rollercoaster over the last 10 years with two pregnancies and life changes all affecting my condition. I have gone from 100mcg to 200mcg in the last 3 years and have now been referred back to an endocrinologist after being (mis) managed by GP's since my last pregnancy 7years ago, this is due to my antibody levels being 263 when the normal range is <20 I believe (I had to insist on an antibody test as they didn't want to do one)!

For the last 7/8 months I have been having increasing symptoms and have gone considerably downhill and feel I'm back to where I started 10years ago. My last bloods were just within range but I don't feel any better.

My concern is I have never been tested for anything like vitb12 or vitd, never had my cholesterol tested etc etc.....i've simply had my TSH, T3 and T4 levels tested and thyroxine adjusted. My consultant appt is just over a month's time, what do I need to be asking for?

Thanks in advance, Kerry.

5 Replies

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shawsAdministrator

4 years ago

Welcome Kerry

We have all been at your stage at one time. Never for a moment imagining that we would have to search the internet looking for information that, theoretically, seems simple to treat, i.e. diagnose according to the TSH level and prescribe levothyroxine and once the TSH is 'within range' the patient is 'well'.

We all know differently and we also react differently to doses of levothyroxine which is the only medication GPs are told to prescribe. No account is taken of remaining clinical symptoms we may have and may well be given prescriptions for 'other than' proper dose of thyroid medications. So, to begin at the beginning.

Always get copies of your blood test results, with the ranges (labs differ throughout the country) and it makes it easier for members to comment.

Always get your blood test for the thyroid gland at the earliest and if you take levothyroxine first thing - do NOT take it until after the blood test. If you take levo at bedtime, miss this dose and take after blood test.

Just ask the GP for Vitamin B12, Vitamin D, iron, ferritin and folate (we are usually deficient) and cholesterol. They are also very important as deficiencies can also cause symptoms. Hopefully your cholesterol will not be high as the optimum medication should lower cholesterol once levo has begun. High cholesterol is one of the many symptoms of hypothyroidism.

Many GP's believe as long as our TSH is in 'normal range' all our other complaints have nothing to do with the thyroid gland but they are wrong. We have to have sufficient medication to remove all clinical symptoms and feel well. Sometimes that comes with a combination of T4/T3 and the Endocrinologist may be willing to give you a trial. Ideally, our TSH should be 1 or lower for many of us. Some may need slightly higher.

You can get well but we have to read and learn so much so that we can have a life without too many complications.

I do hope you have a good Endocrinologist as occasionally they may not be the best people to let us recover our health.

I would get your GP to give you a Full Thyroid Function Test plus the above vitamins/minerals so that you can show the Endo when you see him. Also post them on a new question for members to comment on them.

Regards

Kerry_A

in reply to shaws

Thankyou for that advice, I will be asking my gp for those tests to be done asap and have the results printed for me to take!

I hope I have a good endocrinologist too, I aim to go into the appt with as much knowledge as possible and a list of questions to establish what my treatment options are!

I had an ultrasound yesterday to check for any nodules on the remaining gland as my antibody levels are so high and thankfully there are none, it showed the gland is damaged and swollen/misshapen which is consistant with hashimoto's, whilst I know that is a positive thing I was almost dissapointed as if there were nodules they would be forced to do something, I know that sounds silly but it comes from frustration! I feel that the hypo is treated as standard but the hashimoto's is completely ignored.

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