Hi, This is my first post so please bear with me if the post is long.
My Dad, who is 77 yrs old but as fit and active as a 50 yr old (or was) has had an underactive thyroid for 26 years. Never had a problem, only one dose increase in all that time. A year ago he started to feel poorly, dizzy, sick, exhausted and weak. The doctors said his thyroid level was very high at 30 and lowered Dad's levothyroxine. This has continued for a year, changing his doses and the thyroid began to come down but then shot back up again to 22 and they continued to try and bring it down for a year. He can now do very little, his legs are weak and he says they won't do what he wants them to, he is having to lift his leg into the car, he says his hands won't work properly and they are numb and cold and doing the smallest task exhausts him, even getting dressed in the mornings or shaving. He also seems unsteady on his legs. He has gone from being healthy, strong and active to virtually housebound. He gets no real information from the different doctors that he sees and they don't reassure him that this is thyroid related. He has had other tests and his heart has been checked but it was all o'k other than high blood pressure now. After 11 months of seeing him like this, I wrote to his Doctor with my concerns and asked if it was time he was referred to a thyroid specialist. His Doctor has responded by referring him to the elderly care dept which I have been informed, will only consist of a phone call. We have been waiting on his latest blood results and today, I spoke to a specialist thyroid nurse at the hospital who had taken an interest when I rang in desperation some weeks back and he told me that Dad's results were now back to normal and therefore he didn't have a problem with his thyroid. He told me that they would give Dad an antidepressant because he was probably depressed and that all his problems were probably down to age, I am certain that this is not down to aging. He only had these problems when his thyroid went too high. I had already told him in a previous conversation that my Dad wasn't the type to get depressed and that he was also very motivated. I am angry and frustrated and worried and really don't know where we can go next, if anywhere. The Doctors are no help at all and there is no communication from them, we are always having to chase them for results and they seem to have a total lack of interest. I fear they are looking at his age and just seeing 'elderly'.
We are now willing to pay to see a private endocrinologist but when I rang a local (Watford) one today, the secretary was no real help in reassuring me that this was what we needed and told me to make sure that I was choosing the right person to see so I am now even more confused.
Any advice would be greatly appreciated.
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The doctors said his thyroid level was very high at 30 and lowered Dad's levothyroxine.
Do you know what exactly they mean by 'his thyroid level'? There are three tests that should be done to get the full picture: TSH, FT4 and FT3.
The majority of doctors will only test the TSH, because they wrongly believe that it tells them all they need to know. It doesn't. But, if his TSH went up to 30, then they should have been increasing his dose, not lowering it.
I am sorry, although we have asked for copies of his blood results, we haven't yet received them. I don't really understand TSH, FT4 etc yet but I am trying to learn. It was the thyroid specialist nurse that told me his level should be between 12-16 for a normal thyroid result but Dad's reading was 30 which he said was very high. Hope this makes sense.
I'm afraid the surgery are being very naughty! They are obliged by law to give him his blood test results - a print-out, no less - by law. So, they are breaking the law, and I think you ought to point that out to them.
I know it's all a lot to take in when you're not used to it. But, to try and understand the situation, we on here are going to have to ask a lot of questions. But, I'll give you a bit of an explanation first:
TSH - Thyroid Stimulating Hormone - a pituitary hormone that stimulates the thyroid to make more hormone when necessary.
T4 - thyroid storage hormone. This doesn't do very much until it is converted into T3, the active hormone needed by every single cell you your body.
Ideally, when assessing thyroid status, the three levels should be looked at together, because they are inter-related. But, this rarely happens on the NHS, because doctors know so little about thyroid - nurses even less.
So, your thyroid specialist nures - I didn't know that even existed! But, if she's a specialist, one would have expected her to explain things a little better. So, anyway, she said it should be between 12 and 16? That sounds like it could be the T4 - the test is called FT4 - F stands fro Free, meaning that it is available for use by the body. But, it's rather a strange range, so I have my doubts.
So, if he's been on 150 mcg levo for years without a problem, logic says that this result cannot suddenly shoot up so high under normal circumstances. So, seems to me it has little to do with his dose.
So, two possibilities for why it did suddenly shoot up like that:
a) he has Autoimmune Thyroiditis - aka Hashi's, on here. But, it would be strange if Hashi's suddenly manifested itself at his age. One would expect to have seen evidence before now. So, that leaves the second option:
b) interference with the testing. This happens. So, the first question to ask there is: is he taking any supplements? B12? vit D? A multivit?
they are now saying that his thyroid is now working normally
Now, that is a very strange thing for them to say. Because his thyroid cannot possibly working normally, or working at all, because he's on thyroid hormone replacement. That is to say that he has been on exogenous hormone for years, which will have replacement the normal production of his thyroid. Even if his thyroid is still capable of working, it won't be, it will be shut down. So, one wonders if this is what they really think - in which case they are above average ignorant - or if they're just telling you that because they think you wouldn't understand. Doctors always think their patients are idiots.
The levo he's taking is not a cure for hypothyroidism. It doesn't not have any restorative effects on the thyroid. So, if he was hypo, how come his thyroid is now working normally? That doesn't add up.
When did he have his last thyroid test? You really do need to see the results, not just be feed BS like they gave you above. If he's had his dose reduced by so much, it's very likely that it is now much, much too low and he's hypo again. You really need to kick up a big stink to get to the bottom of this. It's not fair that his quality of life should be reduced by a bunch of dumbclucks who know nothing about his disease. But, unfortunately, it happens all the time, which is why we hypos have to learn about our disease and start looking out for ourselves. And, the first step on that ladder is getting access to his blood test results. Tell them that is they won't play ball, there are steps you can take to force them to do so.
Strongly recommend getting full thyroid and vitamin testing ASAP......privately
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Low vitamin levels are increasingly common As we get older, especially B12
Especially if levothyroxine is reduced
Low vitamin levels tend to lower TSH
How much levothyroxine is he currently taking
Which brand of levothyroxine?
First thing is, do you have any actual blood test results? if not will need to get hold of copies. YourDad is legally entitled to printed copies of his blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
There’s currently an incorrect obsession to reduce levothyroxine dose to bring TSH up ....many, many people, when correctly treated with good Ft3 levels and optimal vitamin levels will have very low TSH
Come back with new post once you get full results
If TSH was 30 he needed dose increase, not decreased
If Ft4 was 30 this likely meant low vitamin levels and poor conversion of Ft4 to Ft3
You need some more information. Get your father to get records of previous years blood results, if possible 5-10 years worth. With luck he will have results for TSH and ft4. From your description above it appears your father was fit and active during this time, therefore it is to these levels that your father should be aiming in his blood tests, not ‘just in range’. There are a subset of patients who need high or over range to feel well. Then write 2 lists, one what your father was doing a year ago and one of what he can do now. This gives definite information to place before the medics. Such acute change in function is not normal, and there is a chance that it is not related to his thyroid, but it should be investigated properly.
It would also be worthwhile getting a full set of bloods as recommended above to give you current upto date information. I wish you well.
Just to let you know, that thyroid meds can lower vit d and vit 12, especialy as we get older, the doctors never tell people this, because they are never trained in vit's in medical school.
My Dad who is 79 is on just 50mcg of Levothyroxine when he used to be on 100mcg a day. I personally think he needs more because his TSH is about 5. However his GP tells him elderly people need less Levothyroxine so he won't challenge his doctor about it. Whenever I ask him how he is he tells me he feels ok but he does have other health problems so he thinks it is normal for him. I feel frustrated that I cannot go with my Dad to his GP and challenge him about the reduction. My Dad won't let me because he thinks his GP is wonderful so my hands are tied.
Thank you all for taking the time to give me your thoughts and advice. Dad and I have a lot to learn. With him having no problems managing his underactive thyroid for so long, we have probably been a bit ignorant to all this information. I know his vit B12 was tested and was o'k and the Doctors told him they had tested for everything else but all tests were good other than his thyroid level which they said was too high and therefore kept lowering his levothyroxine (I am not certain which brand but the brand hasn't changed). He has had it lowered from 150mcg to now being on 75mcg and they are now saying that his thyroid is now working normally although we think he seems to have all the symptoms of his thyroid being underactive. As I live in Southampton and it has been difficult to actually see his Doctor, I wrote a letter to his Doctor explaining how Dad was and how he is now but all that achieved was a telephone appointment with elderly care. I will try to get the extra information and will post again.
Well, this isn't much of an update but just to say that Dad did receive his blood test results. He said they make no sense at all to him but his bloods that were drawn 17 days ago show T4 as 20.3 and TSH as 0.19. He says he can't find T3 on the form this time but back in February it was 5 and normal. I hopefully will get to see these forms but might have to wait as he really isn't up to going out getting copies, posting etc and he doesn't have a good enough phone to send clear photos. It does sound as though he may have had vitamin levels tested but I do intend to find out for sure. He was told that it has only gone on for this long because he was left for four months without a blood test and this shouldn't have happened. That still doesn't account for the other 8 months. I would also like to add that they have told him before that his thyroid levels were improving greatly but then his level shot back up to 22 (originally 30). Sorry if any of this information is confusing but I am pretty sure that this is how the thyroid nurse explained it to us.
He has asked me to hold back on finding a private specialist as he has read in his thyroid book that it can take a while after his thyroid normalises for him to start feeling better. After a year of this, I am sceptical. When I do eventually get Dad's paperwork, I will post it here, if that's o'k.
I would go to your father's surgery and ask for a print-out of his latest blood test results. Take Dad with you if he's able to.
The fact that few doctors know much more than look at a TSH result, and if it's below 1 will reduce the thyroid hormone dose.
Post his results on a new post with the ranges for responses. I don't trust doctors to know anything about a dysfunctional thyroid gland as I had to diagnose myself and was extremely unwell by that time but I had been told I had 'this - that - other'. GP phoned to tell me that all results were good. Good job I got a print-out and saw TSH was well above range so I diagnosed myself.
If a patient is hypo doctors don't quite know what to do and if TSH is somewhere in the range assume the patient is on a sufficient dose.
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