Relatively new here... so totally confused by (... - Thyroid UK

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Relatively new here... so totally confused by (minimal) Thyroid tests and doctor's diagnosis. Frustrated and feeling ill...

anniec11 profile image
14 Replies

I so hope I can put my story as briefly as possible. I am now 72 yrs old Professional (and still working part-time). I was first diagnosed as Hypo some 25 years ago. I suffered from serious depression, so an incidental bloodtest discovered that. Have been on antidepressants ever since. My medication of Thyroxine has gone up and down (depending on which GP is seeing me). Until recently, Ihave been on 150 mcg. Then was told TSH too high and it was lowered by 25 mcg. twice a week. Following another blood test, I was told TSH still to high, so put on 125 mcg 7 days a week. I then asked for a printout of my Thyroid function test. All I received was this: (Please forgive my literal copy, but I'm afraid I just don't understand what they mean) Plasma TSH ,0.01mU/L (0.30-4.20) on 17 May, 17. Then on 6 July, 17: ! Plasma TSH ,0.01 mU/L; !Plasma free T4 level 19.2 pmol/L; and Plasma free T3 level 3.8 pmol/L.

T3 has never been tested before. GP now says that's all ok. Yet, i feel absolutely lousy! I am always tired, depressed and anxious. Recently I have been flying off the handle (unreasonably so and uncharacteristically really) for very little and feel as though too much adrenaline is pumping around my body. (Just a way to describe how I feel!) I have now also been diagnosed with high blood pressure and high Cholesterol. My memory has become worryingly poor. (GP's just put it down to age, yet I doubt that it is as simple as that !!) I also feel breathless quite suddenly after a dog walk. I am incredibly constipated and VERY bloated, which brings all kinds of other problems with it. My vision becomes blurred at times too, yet opthalmologists find no reason for that. Muscle cramps are very painful at times. I won't go on...

I am immensely grateful to anyone even reading this long post, let alone offer advice? I am stuck, and I feel I would like to see a private Endocronologist (relatively accessible to me nr Henley on Thames) and have the necessary tests done. I don't think I have ever been tested for B12. And I know if I go back to my GP (I have printed off some info sheets from Thyroid UK site for GP's) he will dismiss it and will certainly not have or take the time to read any of it. Is there a Lab you can recommend where I could get a reliable and complete blood test done ?

Thank you very much for your time!!

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anniec11
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14 Replies
greygoose profile image
greygoose

As near as I can tell, without the ranges, you have a conversion problem. You are not converting the T4 you are taking, into T3, the active hormone. So, you really need to be taking T3, and for that, you will probably have to self-treat, because doctors rarely know anything about conversion, and won't - for the most part - prescribe T3.

If you look on the Thyroid UK main page, you will find details of private testing. You need :

TSH

FT4

FT3

TPOab

TgAB

vit D

vit B12

folate

ferritin.

Once you have all that, you will be better able to advance. Post the results on here, with the ranges, and people will explain things to you. :)

anniec11 profile image
anniec11 in reply to greygoose

Thank you very much for your information. Strangely, on the sparse printout I got from the GP, I have no ranges in brackets. But as you say, I need better blood tests and then post again. X

Nanaedake profile image
Nanaedake in reply to anniec11

If you do get blood tests done by your GP again then sign up for online access to your results. You need to contact your surgery and sign a form to gain online access. Make sure you ask for access to blood test results too or they will only give you access to online appointments. That way you are better able to track your healthcare and have more constructive conversations with your doctors.

Clutter profile image
Clutter

Anniec11,

Do you take statins?

You aren't overmedicated despite suppressed TSH because your FT4 and FT3 are within range. FT4 19.2 is usually in the upper range whereas FT3 3.8 is usually at the lower end of range. I would have to see the ranges (the figures in brackets after the results) to be certain. For what it is worth, it appears to me that you are adequately dosed and I can't see that your breathlessness on exertion is thyroid related.

Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org if you would like a copy of the Pulse article to show your GP. If your GP tries to reduce further to raise TSH I would refuse.

It may be worth ordering ferritin, vitamin D, B12 and folate blood tests which are commonly low/deficient in hypothyroid patients and vitD and B12 levels drop considerably as we age. If you are reluctant to ask your GP to test you can order private home blood tests via thyroiduk.org.uk/tuk/testin... You can also order saliva cortisol tests which many think are better than cortisol serum tests although your GP may not be interested in interpreting saliva cortisol tests.

Try 100% gluten-free diet for 3-4 weeks to see whether constipation and bloating improve. You may suffer withdrawal symptoms for a week to 10 days. If there is no improvement you can resume eating gluten.

Magnesium citrate taken at bedtime can help with aching muscles and cramps. Magnesium oil spray on the skin and Epsom salt baths can also relax muscles. Magnesium should be taken at least 4 hours away from Levothyroxine.

If you still want to see an endocrinologist email Louise.roberts@thyroiduk.org for a list of member recommended endocrinologists.

anniec11 profile image
anniec11

Hi, thank you for your extensive reply. No, I am not on Statins. GP wants me to go on Statins, but I am reluctant. With regard to ordering vitamins etc... I do wonder whether I have a problem absorbing those that I go get? I have been taking Omeprazole for some time and some say that these prevent you from absorbing B12?

humanbean profile image
humanbean in reply to anniec11

Stick to your guns on statins. There are no benefits to women in having low cholesterol. In fact low cholesterol increases mortality risks. See this article and pay close attention to the graphs :

drmalcolmkendrick.org/2012/...

The graph on the left plots mortality from all causes against total cholesterol. Mortality is at its lowest with the highest levels of cholesterol. The same is true of the graph on the right - cardiovascular disease is lower in people with higher cholesterol, although it does start to rise slightly at the very highest levels - but mortality is still substantially lower in people with higher total cholesterol than in those with the lowest levels.

bwims profile image
bwims in reply to anniec11

I was on Lansoprazole which is similar. It probably helped me to develop my gallstone, since it has the side effect of paralysing the gallbladder, allowing bilial sludge to build up.

When I gave up eating grains, I had no use for antacids anymore. Don't be conned into believe this garbage about "healthy whole grains" - It is an oxymoron.

I recommend "Undoctored" by William Davis, but you can get most of his valuable advice from Youtube here

youtube.com/channel/UCZp4ON...

bwims profile image
bwims in reply to bwims

These videos on DIY Thyroid are quite good

youtube.com/watch?v=iKB96z0...

youtu.be/_bcf6mVXeoY

youtu.be/pry_httXp_E

humanbean profile image
humanbean

For info on private testing without involving a doctor :

thyroiduk.org.uk/tuk/testin...

For general thyroid and nutrient testing, people on this forum usually use Blue Horizon Medicals and Medichecks.

The best test to do when starting off is the test bundle with 11 tests in it :

bluehorizonmedicals.co.uk/t...

medichecks.com/thyroid-func...

Both companies regularly have special offers. To get notified create an account (i.e. register) with both companies and you will be sent emails when they have special offers on.

Both companies allow people to order vacutainer tests (using blood samples taken from a vein) and microtainer tests (using finger-prick blood samples). If you go for the full blood sample from the vein you will have to arrange for blood to be taken by a friend, relative, colleague etc, or you can pay someone to do it for you. Some (not all) NHS hospital pathology departments will do it either for a fee (which varies wildly from hospital to hospital) or possible free (which is rare).

More info and options :

bluehorizonmedicals.co.uk/a...

bluehorizonmedicals.co.uk/a...

bluehorizonmedicals.co.uk/s...

bluehorizonmedicals.co.uk/a...

medichecks.com/how-it-works

When doing private testing like this, collect the blood (by whatever method you are using) early in the morning before 9am, parcel it up, and post it "Guaranteed next day delivery by 1pm".

Samples should be posted on a Monday - Wednesday soon after collection in plenty of time for getting the correct type of delivery. The idea is that the sample doesn't sit in the post office over the weekend, and it gets delivered to the lab when someone will be there to take delivery and do the tests with minimum delay.

ljk1 profile image
ljk1

You might find a good quality probiotic will help-I take a capsule every morning and my constipation and bloating have gone, apparently good gut health is paramount! I also suffer with memory or brain fog-as most of us do-it's nothing to do with age, more likely lack of T3! I also get suddenly breath less, more like a shortage of oxygen, lots of others have also reported this,

silverfox7 profile image
silverfox7

Read up about PPI's. Thyroid people add often low on stomach acid and OPI's reduce stomach acid so could be the reason you aren't absorbing your meds too well and looking like you aren't converting properly. If you decide to cone off them,they aren't suposed to be taken long term then you need to wean yourself off as they are addictive

anniec11 profile image
anniec11

Thank you for that comment. Yes, I am in the process of stopping Omeprazole already. What I didn't know was that they are considered to be addictive.... I know most people on here already know that, but it is mind-blowing how doctors over-medicate you without considering any impact the meds may have on any other meds you may be on... I don't think they even look at your records before they prescribe... NOT good. Thank God for groups like this.

anniec11 profile image
anniec11

I have another printout and this gives the ranges the lab uses when assessing my results. I have a question here... as they are mentioning this as Abnormal, highlighted by an exclamation mark. !! The (short) printout reads like this:

Values and Investigations (latest Value)

6-July-2017 ! Thyroid function test - (GSD157) - Abnormal -

No Action

! Plasma TSH Level <0.01 mU/L 0,30 - 4.20mU/L

! Plasma free T4 level 19.2 pmol/L 9.00 - 19.00 pmoI/L

Plasma free T3 level 3.8 pmoI/L 2.60 - 5.70 pmoI/L

Any help to explain would be much appreciated.

humanbean profile image
humanbean in reply to anniec11

Can I suggest that you put these results into a new post and ask for feedback. On this forum people tend not to reply to posts that are several days old or older.

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