Blood tests 'normal' but still feeling awful

[wezza45]

Hi everyone,

Since being diagnosed with Hypothyroid approx. 10 yrs ago, my dosage has gradually been increased by various GPs in response to blood test results, however over the years I have gradually felt worse and worse with the condition.

6 weeks ago, my dosage was increased again from 150mg to 175mg, however I have not noticed ANY difference in the way I feel! If anything, I have continued to go downhill during this time. Barely able to get up for work in the mornings due to exhaustion, constant 'brain fog', weight gain, aching joints, breathlessness, dizziness, dry skin and thinning eyebrows to name but a few symptoms. To sum up, I feel like I've been running on empty for a long time...

Had a follow up blood test last week and the latest results came back today as 'normal'. TSH is 0.32 ('normal' range quoted by my surgery is 0.2 - 4.2). T4 is 13.4 (normal range 12 - 22). I also persuaded by GP to test for free T3 for the first time, and it came back as 4.3 (normal range 4 - 8.3).

I'm struggling to interpret these results, can anyone shed any light? I want to go back to the GP next week armed with some info and make a case for a specialist Endo referral. So far GP has tried to fob me off with various suggestions - i.e. I am depressed, I need to take more exercise - 'why don't I build up to a 5 mile run?' (at which I actually laughed out loud at how inplausible this is at the moment - feel like I could sooner sprout wings and fly!). All I know is that I don't feel at all well, and currently not able to function like a normal 33 year old.

Help please...?!

[Marz]

Oh Dear - poor you being told to run ! Your FT4 is low as is the FT3. It could be a conversion problem - in that the T4 your are taking is not converting into the Active Hormone T3. T3 is needed in every cell in your body so when the T3 is low - yes you will feel tired and have aches and pains.

It could also be an Adrenal issue. I am not able to help you with that - but there is good information on

stopthethyroidmadness.com drrind.com

If you are taking a reasonable dose of T4 and it's not converting then it could also be a rT3 problem.

I know it's sometimes overlooked - but it is important to have good levels of Iron - Ferritin - Folate - B12 - VitD for T4 to convert into T3 and for you to feel well. All those should be tested and they should be high in their ranges.

Wishing you wellness - and keep on reading and learning and you will soon find wellness via this forum - lots of very helpful people who know lots more than me - they will soon be popping by......

[wezza45 in reply to Marz]

Thanks for your reply Marz. I had suspected there may be some issue with the T3 conversion, which is why I asked GP for the T3 test. He was a little reluctant but agreed in the end.

Difficult to argue with a GP who is adamant results are 'normal' but nevertheless I will try when I see him next week!

Have read about adrenal fatigue being a possible reason why thyroxine is not converted in the body. I understand many GP's don't even recognise adrenal fatigue as an actual condition? What's your experience of this?

Interesting that several people have mentioned vitamin deficiencies - will ask to have this checked out.

[Marz in reply to wezza45]

Vitamin deficiencies are VERY common and cause no end of problems. I read further down that you mentioned you had been tested for anaemia....and that all was well. Try to obtain copies of your blood results and post them here with ranges. It is your right to have copies of all tests. It could be that what your Doc considers OK is not. They are governed by ranges and rarely look at the individual. The tests I mentioned above are NOT included in the routine FBC - Full Blood Count...as far as I know. I live in Crete so things are different.

When your Doc insists your results are Normal ? - then you could politely ask - what is normal ? What is normal for one is not normal for another. They mean - in range - which is a totally different thing.

No - Adrenal issues are rarely acknowledged until they are whacked completely. Possibly because they do not know how to treat them - and it's all too complicated for them - again we are all individuals. We have to find our own way in most cases. Too much cortisol from the adrenals can block the T3 receptors in the cells I have read.

If you would like to read up more about T3 there is a website rwt3.com Paul Robinson is also a member of this forum and has written books. You may learn from his blogs and website far more than we can explain here. His book is a good read - it is about his journey to wellness.

[shaws]

Hi Wezza,

I am sorry you are having problems with levothyroxine. Many people do. Unfortunately the guidelines state GPs can only prescribe levo.

I am not that good with blood tests and someone will come in with a better explanation. Your T4 is too low and I would say too that your T3 is too low. These are two excerpts and you can also read about the blood tests which are above this excerpt:-

Taken from Medicine International 1993

"The aim of thyroxine replacement therapy is to normalise plasma TSH and to achieve a clinically euthyroid state. To obtain this, FT4 and TT4 have to be maintained at, or just above, the upper reference interval".

NB: Dr. Toft, Consultant Physician, states in the British Thyroid Foundation newsletter Issue No. 23 that normal ranges are: T4 (10 – 25) and TSH (0.15 – 3.5). He also states that "the correct dose is that which restores good health; in most patients this will be associated with a level of T4 in the blood towards the upper part of the normal range or even slightly high and a TSH level in the blood which is in the lower part of the normal

Taken from Medicine International 1993

FT3 = FREE T3

T4 converts to T3 and is the only thyroid hormone actually used by the body's cells.

The approx. reference range for Free T3 is 4 to 8.3

We at Thyroid UK believe that you need to know your Free T3 level too because this will often show low if you are not converting, and high if you have blocked receptor cells. Even if you are converting, the body needs the extra T3 that a normal thyroid produces. There has been some research to show that people feel better on a mixture of Thyroxine (T4) and Triiodothyronine (T3). Effects of Thyroxine as Compared with Thyroxine plus Triiodothyronine in patients with hypothyroidism – The New England Journal of Medicine Feb.11, 99 Vol. 340. (Click here for this article).

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

email [e-mail] and ask for a list of sympathetic NHS Endos or private doctors and tell your GP you want to be referred. He appears to know little except the TSH level.

[wezza45 in reply to shaws]

Thanks, this is really helpful. I have emailed Louise for the list.

In your experience, what might be the best way to get a prescription for T3. Is this Armour? I understand there is generally reluctance within the NHS!

[wezza45]

They haven't tested ferritin, although did have test for anaemia prob a year to year and a half ago. Tested ok at the time, but will request a re-test.

Interesting re the T4 and T3 levels. Are you taking T3 and if so how did you manage to get this prescribed? Was it through the NHS?

[Tweetypie28]

Have you never had your vitamin and mineral levels tested? If you haven't, I'd really reccommend you do. I ended up paying for a full blood count done via blue horizon medicals and thanks to this, I discovered I was vitamin d deficient and iron deficient. If I had of left it solely to the GP, I know she would have just raised the Levo like yours. Once I had the full blood count results, I asked to be referred to a specialist. Even the specialist has only added in T3 since seeing her and still felt unwell so went for another full blood count (on my own accord) which this time has brought up low folate so even though it's cost me, I have discovered what's wrong with me without GP/endo.

Go back to GP and ask if you can be tested for vitamin D, ferritin, B12 & folate. Explain that you have researched your condition and found out its possible for someone with an under active thyroid to be deficient in one or some of these areas. I have learnt that your vitamin and mineral levels need to be optimal for the Levo to work at its full potential. If he just won't authorise these tests, go on the blue horizon website and have a look at their tests.

Even if the tests come back saying you are fine in these areas, at least it can discount that as being your issue. Best of luck x

[wezza45 in reply to Tweetypie28]

No, not had vits tested but will definitely be asking GP if he can do this - will try my luck with the NHS first, but good to know I can get these tests done elsewhere if necessary. Are you now feeling well on the T3 & T4, plus supplements? x

[Aseth]

You may need a course of vitamin D3 along with Vitamin B complex supplements. This made a huge difference to the way I felt .... very similar to how you are feeling now. Am back to my cardio and yoga exercises. I am 64 years old.

[wezza45 in reply to Aseth]

Thanks for your reply. It seems the general concensus from everyone is get vitamin levels checked so that is my next port of call! Glad to hear this made a real difference for you - encouraging to hear of someone feeling better. Are you just on levothyroxine?

[celticlady]

Also-be wary when they check your iron levels-mine were classified as 'Low Normal' - an oxymoron if ever I heard one! Iron levels were 23 which is very low-need to be about 100. So I've just started with supplements from Healthspan-gentle stomach friendly tabs-will update after 2/3 weeks and see how it's going!!

Take Care-x

[wezza45 in reply to celticlady]

Thanks, would be really interested to hear if the supplements have a positive effect. Hope you feel better on it.

Think I need to ask for a re-test of iron levels.

x

[wezza45]

Did they manage to get NDT prescribed through the NHS?

[wezza45]

Thanks everyone for their replies.

Saw GP yesterday. Managed to get an Endo referral and vit blood tests, despite GP being adamant that my symptoms were not due to Hypo - apparently all within range, so thyroid is absolutely fine...!

Not an unexpected response, but on the positive side perhaps the Endo may be more helpful when I see him in June.

Will check back in with blood test results when I have these.