Hello! The first post, so please excuse me if I'm stating the obvious here.
I've been suffering from exhaustion for years now and I've always been told my thyroid function is at the lower end of normal. All the women in my family have underactive thyroid, but I've just done as I'm told and carried on without treatment. My aunt is within normal limits but has been told that this is still low for her and she has been treated and feels much better for it.
For the past few months I've been experiencing a weird twitching tongue, so I went back to the docs. I had a blood test for anemia which they thought could be a cause (and I get problems with anemia quite a bit too).
My doc rang me back with the results yesterday and because I had come off nights she woke me with the news and I was a bit dazed and surprised to hear that my thyroid is now just below normal and my phosphate level is low. She is going to retest me for Ferritin levels apparently, I don't know why.
She did say the numbers of the thyroid test, but I didn't write them down and I can't remember what they were or what type of thyroid levels were tested. I just remember sitting bolt upright because for the first time she said my thyroid function was low. But she also said that they were only just below the line so she wouldn't treat it. She wants to test my thyroid again in 3 months to check the results.
I'm a bit confused. I've basically been waiting for a drop so I can start treatment. I got told this week that I look worse than my patients. And as for the phosphate levels - I don't drink much alcohol (about 1 unit a month) and I take regular vitamin D supplements. But low thyroid function can cause low phosphate. Surely even if my thyroid function is only just below the line, if it's starting to impact on the rest of my body chemistry it needs to be sorted?
Has anybody else been told their thyroid is low but they won't be treated for it?
Too tired to fight this.
Kate
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Kate_Chester
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Hello Kate and welcome. I would suggest that you get a print out of all your results so that you can see exactly what has been going on. Post your most recent results here and we can then give you some advice, rather than simply agreeing with you on the lack of testing and interest in a failing Thyroid. Getting diagnosed can take a long time but we can offer support and information on the whole process.
Hi Kate - A year ago I was told I was borderline hypothyroid but they did not treat me and I was told they would retest after a year. I have declined over the year and am suffering from terrible fatigue and it has started to affect me mentally. I have had bloods taken today which hopefully will mean I can start to be treated. The best advice I can give you is to be more assertive with your doctor as it is clear that the quality of your life is being affected. I wish you all the best.
You must obtain those results with ranges and post here in a new post if there is a time delay. Go back a few years of results - there could be some surprises .... 😊
Docs often test just the TSH and occasionally the FT4. You also need the FT3 and thyroid anti -bodies TPO & Tg.
When Hypo the following are often low - B12 - Folate - Ferritin - VitD. How much VitD are you taking ?
When will you be coming off nights? Get some sleep. Rest, then go into battle.
I would most certainly not wait 3 months for retesting.
Write a list of all your symptoms. Check your temperature occassionally and add to list if low.
Ask your doctor for an urgent referal to Endocrinologist.
Ask your doctor for an Ultrasound scan of your Thyroid.
When you have seen reception for a print out of all your blood test results you will know what has/hasn't been tested. You need your Thyroid Antibodies tested ie TPO and Tg. Where I am (Wales) usually only hospital Consultants do Antibodies.
You will need to ask for your levels of Vitamin D and B12, Folate as well as Ferritin to be tested.
Your GP should have no problem doing the Vitamins tests and sending you for the scan. Keep on with this now. You will feel up to it after you've caught up on sleep and with the support you will receive on here. There are so many, many of us who have 'been through it' ( suffered years without diagnosis and treatment ).
It's an uphill struggle, taking on the NHS and getting diagnosed, it shouldn't be. BUT you will find lots of help on here from genuine, caring people.
Why did GP prescribe Vitamin D? What was the diagnosis?
Did GP test Phosphorus?
You may want to ask GP for tests for Calcium as well as Phosphorus also PTH.
Are you a Nurse / HCA working in the NHS? If so, have you considered having a word with Staff Health?
I took ill on nights. We were supposed to work 6 weeks of days then 2 weeks of nights. Was in EMI. So worked hard during some nights. Manager put me on nights 4 consecutive weeks. I became very ill with exhaustion and very painful throat. Staff in charge wouldn't even send me home. Weight went on literally overnight. Came back on days with swollen legs and very heavy tired feeling all the time. That was in the early 90's. ( Eventually lost my job. Lost 2 good jobs to ill health. ) wasn't diagnosed till late 2011 despite being very ill in 2008 and having Hypothyroid Blood results that no one told me about. Also deranged /abnormal Liver Function results which I'd also had in the 90's.
So keep on with this till you see Endo, get diagnosed and treated.
I also had Short Synacthen Test to check my adrenals first which Endo arranged quickly in 2011. Apparently that was important before I started Levo. Adrenals were OK.
When you go for the next (or any) thyroid test always get blood drawn as early in morning as possible and fasting. This is when TSH is at its highest, increasing chances of diagnosis.
Hi guys, thanks for the response. I've not been prescribed Vit D, but because I work nights I decided to take supplements. It's made a difference to my immune system, I never seem to get the lurgy! My phosphate was low, but I don't know the figures. I don't even know why I have to have my ferritin levels retested. My levels were tested in the afternoon last time, so will make sure my next blood test is done first thing. My temp is normally low. I don't tollerate heat or cold. My face is all puffy to the extent that my swollen nose always feels blocked. The exhaustion means that I have to take daytime naps and when I work nights my boss tells me I look worse than my patients. This could obviously be the iron levels again as I've had that many times before despite no apparent cause. And I'm open minded to the fact that it may not be hypothyroidism again. However, symptoms and family history suggest that I'm slowly heading that way! Thanks for the tips, i'll see what happens
You may have a high ferritin level. This generally indicates infection, inflammation or chronic disease. If it is the first one then on a retest your ferritin level will be in range.
If you had a low ferritin level the next step would be to do a full blood count to check for iron deficiency. As your doctor didn't say they wanted to do a full blood count then I conclude it is high.
I would suggest as the others have said to get your test results going back years if possible, post here so you can see what tests haven't been done and then ask your doctor to do them. Posters here will give you reasons why so when you ask your doctor to do them you can explain why you want them done. If your doctor can't do a particular test for example most GPs can't do free T3 and some refuse to do folate then you should get the test done privately.
I've suffered with low ferritin a lot in the past and usually end up on iron tablets. I'm sure the doc said this time it was low ferritin. I had low ferritin last year too, so it would be a bit weird for it to now be high. I'll look into the private testing to see what I'm up against in terms of cost.
I went back for another blood test today (this time checking ferritin and vitamin levels) and I asked what my last thyroid result was. It was TSH and it was 5.52. She said that anything up to 5.5 is normal, so they would not treat something that is only 0.02 over. However, the NICE guidelines says up to 4 is normal, so I'm all confused again.
I was in the same position, TSH just out of range so reluctant to treat. I cannot for the life of me understand why they have a range at all if they don't treat when you are out of it. Surely you are either out of the normal range or you aren't! How can you be just a little bit out of range? Either the range is wrong or the thinking needs to change...and they need to listen to the patient and look at the symptoms not just the numbers.
Hi Kate. I know how frustrated you must be. Does your surgery let you access your medical record ie to get prescriptions and make appointments. If so than if you do this you can also see the consultation write up and what tests have been done and the results. Makes it a lot easier to keep track of what’s going on and not having to write notes to remember info. Sounds like you should be at least put on treatment to see if your symptoms improve. Hope you get things sorted
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