Don't understand my lab results.

[nastythyroid]

I recently had some bloods done and results came back as: TSH 0.55, T4 9.0 and T3 6.3.  I was originally on 200mcg of Levothyroxine back in February this year when I was first diagnosed with hypothyroidism - TSH was 35 then.  Had lots of problems with Levothyroxine and GP refused to refer me to an endocrinologist as my TSH had come down to 6.7 which he said was normal.......NOT!  Hubby took me to an endocrinologist in Germany (hubby is German) and he put me on armour thyroid and tested me for anti-TPO and Anti-tg, as well as perform an ultrasound, thyroid gland was only just visible in part and he diagnosed Hashimoto's Disease. I have done ok on Armour, symptoms of hair loss and joint ache left me (terrible hair loss on Levothyroxine).  I am now taking 2 grains of Armour thyroid and had bloods taken from my GP's practice to send to the endo in Germany.  The surgery are miffed at me and won't discuss the results because I'm seeing an endo outside of the UK and taking Armour thyroid which is unlicenced here.  I have explained to the GP, who should know anyway, that I have been told I cannot convert T3 from T4 so no amount of Levothyroxine in the world will do anything for my thyroid.  
I have been gaining weight steadily since just before I was diagnosed and am still gaining weight even though I was hyperthyroid in April - not sure if I am still hyperthyroid as I can't understand the T4 and T3.  I believe the TSH is the low end of normal.....or am I wrong???  Can anyone help me to understand these results and also explain why I am gaining weight when I am neurotic now about counting calories and walk for at least one and a half hours every day with my little furry friend - my dog.

[nastythyroid]

Thank you so very much for your support and for providing me with the pdf link.  

I am absolutely with you on the definition of a good doctor treating us with thyroid disorders and there isn't a soul out there who would disagree.  Unfortunately too many doctors go by the ink on the paper all too often when the patient is sitting in front of them and their whole body is screaming hypothyroid - coarse brittle hair, skin like an alligator, puffy eyes, achy, low mood, and 30 more.......When my GP told me initially that is was my age and that I should accept tiredness and dry hair as part of the ageing process, it took every ounce of inner strength to stop myself pushing her smug smiley face onto the  carpet.  Grrrrrrrrrrrrrrr.  I asked for a thyroid function test back in February and reluctantly she gave in and when it came back showing I was hypothyroid she offered no apology to me.  It is very true, we have to take charge of our own health and if that means ruffling a few feathers then so be it - the alternative is too frightening.

In the UK, any drug that is not listed in the British National Formulary cannot be prescribed.  I have no idea when the patient who managed to get Erfa privately was able to do so, but it is not legal at this point in time.  No doctor is permitted to offer any alternative - Levothyroxine is the only licenced medication here in the UK.  It means that patients buy from online pharmacies or perhaps like me, have their medication posted from a pharmacy within Europe with a doctor's prescription.  It is not illegal to buy it from overseas, but pharmacists here in the UK are not allowed to order it on a patient's behalf as no doctor can legally prescribe it.

I do understand what you mean when you say I should hang on in there for the sake of other patients, some days though it just gets too much.  I feel very isolated.  My GP didn't know that Armour had T1, T2, T3 and T4 in it, it also contains calcitonin which helps to prevent calcium depletion and she caustically asked if my German endo had told me that. " NO, READ ABOUT THYROID ONLINE LIKE PATIENTS DO," I pleaded with her.  Here in the UK I was told when my TSH went down to 6.7, it was normal.  It is not normal, even with the older values of 0.5 - 5.0, it is still out of the normal range.  In Germany it is infact 0.2 - 2.0 and the endo there said some patients do not feel well until they are at 1.0 or even below, bordering on hyperthyroid but he goes on their symptoms, he listens to them.  

What will happen, or could be happening already, is that patients in the UK may be forced to self-medicate - they may not have the privilege of going to Europe to be seen by a sympathetic specialist and try to reach an equilibrium themselves and that scares me witless.  Why can't our GP's here see that?

I still haven't taken any Armour today - I look at it and don't know whether it is friend or foe!  Again many thanks for your support.  L

[gimel]

Don' ever even think about throwing in the towel.   I know how difficult it is in the UK, but we have UK members that have been successful in getting the treatment needed.  More on that in a minute.  Meanwhile I wanted to give you my definition of a good thyroid doctor.  A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results.  This is a link to a letter written by a good thyroid doctor for patients that he consults with from a distance.  The letter is sent to the Primary Doctor to help guide treatment.

http://hormonerestoration.com/files/ThyroidPMD.pdf

From what I learned from a UK member, it is not impossible to get Natural Desiccated thyroid meds there.  This is a quote from a PM from the member, that she does not mind sharing.

"When I went back to the  Medical Centre to get the results from seeing Dr ______, I saw another Dr -  - to whom I told the whole story... and he was supportive of my taking NDT.  He then wrote me a private prescription - just by basically writing a letter including his medical registration number and "please supply such and such a drug to such and such a person at such and such a rate" (necessary text when writing a private prescription in the UK).

I then found a pharmacy called Springfield Pharmacy on the outskirts of London, in Richmond, by reading forums.  They prescribe Erfa and the pharmacist called Mr Springfield there is very, very supportive.  It is expensive, though.  A month's worth of medication is £35.

And yes, in the UK, it is so hard to find a Dr to prescribe it to you because it's not one of the recognised medications in the British medicine book (I don't know what it's called).  They have to choose their medications that they prescribe from a book which allows the use of certain medications.

What I have learned from my experience is that you have to go to the Dr's office and TELL THEM WHAT YOU WANT and to go backed up with knowledge.  You have to tell them that you have done your reading and looked into your condition and care about the long-term treatment of your health and thyroid.  If you fight for what you want, you will eventually find someone that is happy to go along with your wishes.  But we all have to take charge of our own health, right?"

[nastythyroid]

First of all thank you so much for taking the time to respond to my query.  I understand about the TSH being a pituitary hormone and I also understand that levels of TSH will be suppressed when we are taking thyroid meds - it is not the only results that doctors should be looking at but here in the UK, it seems to be the only diagnostic tool they use - one size fits all approach.

I have challenged my GP and informed her that I have Hashi's and the endo in Germany has said my thyroid is only a slight shadow and has all but been destroyed by the antibodies and I cannot convert T4 to T3 so what happens to patients here in the UK in my situation???  NOTHING!!  They get prescribed Levothyroxine, there is no T3 medication licenced for them to prescribe and they all seem to be brain washed in med school or become tunnel visioned.  When I asked for T4 and T3 levels to be tested I was told it was not standard practice and I was accused of being a drama queen!  Damned right - I dug in my heels and got the results but they are not detailed and they have only told me the results I posted earlier.  When I asked for free levels and total levels the doctor asked me to leave the medical side of things to her and stop worrying!!!  

When I went to the endo in Germany, he ran extensive tests and here are the results - they are in German but can still be understood for those of us who don't speak German.  Here goes:


ACTH 13 pg/ml (NW 5-46)
13|END -07643719 /LG/ 27.04.11
Probenmaterial: EDTA-Blut
BB; LEUK=6.1 tsd/μl; Norm. 4.3-10.0; ERY=4.62 Mio/μl
Norm. 3.90-5.30; HB=13.9 g/dl; Norm. 12.0-16.0; HKT=42.40 %
Norm. 36.00-46.00; MCV=91.8 fl; Norm. 80.0-101.0; MCH=30.1 pg
Norm. 28.0-35.0; MCHC=32.8 g/dl; Norm. 32.0-36.0; PLT=243 tsd/μl
Norm. 140-400
Probenmaterial: Serum
PROT=7.0 g/dl; Norm. 5.7-8.2; HST=40 mg/dl; Norm. 13-43
KREA=0.80 mg/dl; Norm. 0.50-1.10; GFR=>60; Norm. ab 60
NA=141.5 mmol/l; Norm. 136.0-145.0; K=5.4 mmol/l
Norm. 3.50-5.50
04|END -22927-2 /LG/ 27.04.11
Thyreotropin=0,01 μlU/ml; Norm. NW 0,27-4,2;
freies T3=14 pg/ml Norm. NW 2,0-4,4;
freies T4=3,3 ng/dl; Norm. NW 0,93-1,7
Cortisol=19 μg/dl; Norm. NW 5-25;
Anti TG=576 U/ml Norm. NW 0-40;
Anti TPO=16 U/ml; Norm. NW 0-35

To answer your question, these lab results above were done on the 27th April and yes I was taking 2 grains of Armour for 3 weeks prior to being seen by the endo In Germany.  The endo told me to stop taking the Armour for 2 weeks and suggested I try Prothyrid, a German equivalent of Levothyroxine 100mcg and Liothyronin 10mcg.  I refused because of the levothyroxine and so he said to leave it 2 weeks without any thyroid meds then start back on the Armour.  He said he thought I had gone hyper because I had switched from Levo to Armour abruptly.  I started back on Armour at 1 grain, 2 weeks later 1 and a half grains, 2 weeks after that 2 grains then I had the blood tests done and was given the results 10 days ago by my GP - TSH 0.55, T4 9.0 and T3 6.3.

I should say that when I was told I was hyperthyroid, I was surprised as I had no symptoms of being hyper at all!  Infact I felt great.  Until last week I have felt very well, no indication of being hyper at all.  For the past week or so I have started to feel achy, particularly in my hips and shoulders and I have read that muscle aches can present when a patient is hyper or hypo thyroid.  I do not understand at all why I am gaining weight as I am very careful of what I eat and don't crave unhealthy food.  I walk the dog at least one and a half hours every day, sometimes more but I have to push myself to do it as I feel tired and don't enjoy things the way I used to.  I don't want to tell the GP as she will just scream depression at me and the last thing I need is to be more brain fogged than I am already.

I apologise for the length of this email and as I don't proof read, excuse any typos or evidence of brain fog.  I feel so desperate and today I am so cheesed off that I haven't taken any Armour - I am so ready to throw in the towel.

Sincere thanks,

L

[gimel]

TSH is not the test you should be using to assess your thyroid status.  TSH is a pituitary hormone that is affected by so many variables that it is inadequate as a diagnostic.  At best it is an indicator, to be considered along with more important indicators such as symptoms, and also levels of the biologically active thyroid hormones, which are Free T3 and Free T4 (not the same as Total T3 and Total T4).  TSH is even more unreliable when taking thyroid meds, like you are, which frequently suppresses the TSH level.  That does not mean that you are hyperthyroid, unless you are having hyper symptoms due to excessive levels of FT3 and FT4.

I think that the test results you listed are for Total T4 and Free T3, but would like to be  sure.  Please confirm that and also post their reference ranges shown on the lab report.  Also, do those lab results reflect your meds being 2 grains of Armour?  Just wanted to also confirm that.