please give me advice so I can go armed with qu... - Thyroid UK

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please give me advice so I can go armed with questions and info on my GP visit next week( oh yes) I have actually got an appt., LOL Thankyou

darb profile image
darb
16 Replies

30/4/14 - no ranges given on printout and no other test taken other than below:- NOT TAKING ANY SUPPLEMENTS.

TSH 14.4 mIu/L high

SERUM FREE T4 17.5pmol/l

WAS TAKING 125MCG LEVOTHYROXINE (no other meds) feeling pretty low mood, pains etc., was asked to up to 175mcg which I did religiously.

13/06/14 RETEST taken did not take levo before test results as follows, also not taking any supplements, once again NO RANGES ON PRINTOUT asked to drop to 150mcg levo

TSH 0.02 MIUL/L LOW

SERUM FREE T4 25.1PMOL/L

SERUM FREE TRIIODOTHYRONINE 5.7 PMOL/L

SERUM FOLATE 9.58 UG/L

SERUM FERRITIN 138UG/L

SERUM VIT B12 =383.2 ng/l

VIT D = 47.1 NMOL/L

INTERPRETATION OF TOTAL 25-OH VITAMIN D

RESULT 25-50 NMOL/L = VITAMIN D DEFICIENCY.

MCV 90FL

MCHC= 311G/L

MCH = 28PG

LYMPHOCYTE COUNT = 1.6 10*9/L

TOTAL WHITE COUNT= 6.1 10*9/L

RED BLOOD COUNT 4.72 10*9/L

CORRECTED SERUM CALCIUM =2.28 MMOL/L

CA125 = 9.1 (RESULT IN 04/12/12) just for any reference if needed- I am post menopausel

ALSO HAVE NOTICED LOOKING BACK TO 2009 -2012 MY GFR MDRD =59ML/MIN LOW 2012

=62ML/ 2011

=56ML/LMIN LOW 2010

=64ML/L MIN LOW 2009

= 68ML/L MIN LOW 2007

Also thought I would put thyroid results for previous years as to consistency or not?

11/12/13

SERUM FREE T4 = 18.9PMOL/L

SERUM TSH =4.69MIUL/L = 125MCG LEVOTHYROXINE

04/12/12

SERUM FREE T4= 20.7PMOL/L

SERUM TSH =4.57MIUL/L = 125MCG LEVO

04/10/11

SERUM TSH =1.45MIUL/L =125MCG LEVO

NO OTHER RESULT- A BIT WEIRD OTHER THAN AS FOLLOWS

16/09/11 ANTI NUCLEAR FACTOR NEG tested at derriford hosp

16/09/11 ANTI NUCLEAR FACTOR

original result "ANTI-NUCLEAR ANTIBODY" ( copied as exactly in order on my print out)

19/07/2010

just says TFT ON THYROXINE NO RESULTS GIVEN- RATHER STRANGE! = 125MCG LEVO

PLASMA VISCOSITY =1.82 MPA/S (1.5-1.72) HIGH (ANY RELEVANCE NO IDEA)

2009 TSH = 2.74 MIU/L OTHER RESULTS WAS NOT TESTED! = STILL TAKING 125MCG LEVO

28/11/2008

SERUM FREE T4 = 23.5 PMOL/L

SERUM TSH = 0.18MIUL/L =125MCG LEVO

2007

SERUM FREE T4 =21.6PMOL/L

SERUM TSH = 0.13MIUL/L = 125MCG LEVO

2006

SERUM FREE T4 =22.7PMOL/L

SERUM TSH = 0.16MIUL/L = 125mcg levo

I have print outs to 2006 but they do not put reference ranges, so sorry but if anyone can see a pattern here? would be grateful because I have never felt right since being diagnosed back in about 1991/92 with hypothyroidism all the usual permanent pins needles/funny vibrations in legs/headaches/ pain in joints especially knees/bad back, pain in left eye, sweats, low mood and energy very low etc., muscles seem to ache, and pain on just rubbing limbs,

I apologise for long essay! but just need to be well informed on my GP visit (so I know what I am talking about) so I can ask either for better management or to see Endo and or get a definitive diagnosis ie Hashis or autoimmune or other such diagnosis.

Thank you in advance as I know I will get some truth and help on this lovely site.

DARB.

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darb
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16 Replies
humanbean profile image
humanbean

Can you check you have typed these results correctly please :

SERUM VIT B12 47.1 NMOL/L

INTERPRETATION OF TOTAL 25-OH VITAMIN D

RESULT 25-50 NMOL/L = VITAMIN D DEFICIENCY.

The B12 result actually looks more like a Vit D result to me, and I think you may have missed out a B12 result.

darb profile image
darb in reply tohumanbean

sorry yes your right result above vit d my B12 was 383.2 ng/l

Clutter profile image
Clutter in reply todarb

Darb, saw this after I posted below, 1-2,000mcg daily methylcobalamin sublingual lozenges, spray or patches should give you the boost you need.

It looks like your levels were much improved on 175mcg Levo. Pity you've got a paint-by-numbers doctor who got unnecessarily freaked out by a suppressed TSH.

Your B12 is pretty low (the Japanese consider anything below 500 to be horribly deficient) and your Vit D levels are also low. So there's a couple of things to start supplementing. At those levels though it's unlikely you'll get prescriptions for vits, so I'd recommend you look into getting yourself some quality supplements.

darb profile image
darb in reply to

Thank you LilyMay

Clutter profile image
Clutter

Darb,

Please insist on being given lab ref ranges with your printouts as it's impossible to interpret some results.

You could ask for thyroid peroxidase antibodies (TPOab) to be tested. If you have autoimmune thyroid disease (Hashimoto's) this would explain your fluctuating TSH.

You need a prescription for your vitD deficiency. Your ferritin and folate look ok but I'm unable to interpret your B12 without the ref range as I'm used to seeing B12 expressed in ng/L ref range (190-900). You may find the information you need to work this out in b12deficiency.info/what-to-...

vitamindcouncil.org/vitamin...

darb profile image
darb in reply toClutter

Thank you Clutter B12 383.2 ng/l but no reference ranges but will see if doc will help!

motherelle profile image
motherelle

Apart from the pins and needles these are my symptoms exactly ,especially the sweats and fatigue .The pain when

rubbing legs also rings a bell for me .Supposedly i'm medicated ok .Will watch your posts closely ,see if you get any answers . Good luck with your appointment darb !

darb profile image
darb in reply tomotherelle

Thank you motherelle

shaws profile image
shawsAdministrator

If the doctor adjusts the medication on your TSH alone, you may end up having bigger problems.

The GP should go on how you are feeling, not medicating according to the TSH which varies throughout the day anyway. This is a link for info.

healthunlocked.com/thyroidu...

If you cursor down to my response as the question is so similar to yours and read the answers suggested.

darb profile image
darb in reply toshaws

Thank you Shaws had read but still do not understand it! looking at my TSH levels throughout the years seem very variable and yet each time I have been told within range but my serum free t4 seems variable as well. I'm confused.

Please what questions should I be asking the GP I know my vit D and B12 are low- should I insist on more thyroid indepth tests? ie antibodies etc., also would I benefit from seeing an Endo?

All I know is that I can honestly say I have never felt right since being diagnosed hypo! Also does continual tinnitus and the feelings of what feels like vibrations in body & really achy knee joints, my left ankle aches and is painful one day but then not the next? Lft eye pain on and off? etc .

I do not want to look a right donut in front of the GP- want him to think I know what I'm talking about. Sorry to be a pain , many thanks Darb .

shaws profile image
shawsAdministrator in reply todarb

When doctors adjust medication according to where TSH level is you will have variable results. If he adjusts your medication according to your clinical symptoms, i.e. increases your dose due to how you are feeling or decreases due to having too much hormone (overstimulated, sweats, hot, fast pulse etc) the patient gets to a dose in which she feels well and stays at that dose with a yearly blood test. If you begin to feel unwell, that's when you get your blood retested but many doctors say you are fine because your TSH is in the range when the patient feels anything but.

It is also important that your other vitamins/minerals are at optimum.

eeng profile image
eeng

Unfortunately getting a 'diagnosis' or antibody test results won't actually change your situation, because the treatment you receive will be exactly the same (unless maybe you see one of those rare people who are willing to try you on T3 or NDT). Your TSH and T4 results are bound to vary a bit - TSH changes depending on the time of day you have your blood test, and T4 levels will change depending on how well you are converting from T4 to T3, which in turn will depend on things like your Ferritin level, levels of physical activity etc. So the important thing is to focus on your symptoms. How do you feel on 150mcg rather than 175mcg? Vitamin D deficiency can cause aches and pains. Was the tinnitus any better when you were on 175mcg? My gut reaction hearing your story is that you would do better on NDT or T4/T3 combination, but you may struggle to find a doctor who will do that.

darb profile image
darb in reply toeeng

Thank you eeng for your reply, no Tinnitus was no better or other symptoms really, the GP who I have an apt with is quite a young GP who is more patient orientated have not seen him before but understand from other peeps that he listens! but if his hands are tied to reguard T4/T3 NDT, I suppose I will not get it, incidently what is the T4 name, make, etc,.also can they give vit D prescription? also my B12 ? many thanks Darb

eeng profile image
eeng

T4 is what Levothyroxine contains, which you are already taking. T3 is also called Liothyronine. They can give a Vitamin D prescription, you need to start on a high dose - there are some guidelines that someone else will be able to send you a link to. You can take something like 10,000 units for a few weeks, then go down to 1000 or 2000 units. Multivitamins and over the counter Vitamin D usually only contain something like 800 units which won't help you much. Apparently you need D3 not D2. Other people can help you on B12 or look at some older posts.

darb profile image
darb in reply toeeng

Thank you for your help.

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