Help with latest blood test and appointment with Endo on Wed

[Duffy26]

Hi all.

I have received a copy of my results from Medichecks today. To cut a long story short I have many symptoms of hypothyroid but because of my results I cannot get diagnosed despite a list of symptoms. The last doctor I saw (who is quite sympathetic) I said to her that I was so fed up now that I was going to just trial thyroxin myself! and see if I feel any better if the F4 and FT3 are raised slightly. I also mentioned central hypothyroid as with my worsening symptoms especially over winter. I expected TSH to be much higher. She actually said that I know more about this than her so she was prepared to refer me to an endo. Was very thankful but now with these latest results I don't hold out much hope again.

I had both these and the NHS ones taken on Friday morning at 9 (as one was a cortisol test). I don't not have NHS ones back yet as appointment is on Wednesday and Endo will review them then. I saw the Rhuematologist in March 2018 who also tested

FT4 12 (8-21)

TSH 2.23 (

0.35-3.50).

I have also tested positive for some ANA/ANCA/IGGA test, although they were not wildly high so the rheumatologist thinks I have Sjrogrens but this is not confirmed. She said due to the family history it might be useful to see an Endocrinologist.

Im feeling so tired, so achy, skin is so itchy especially on my arms, low temperature on waking, foggy brain, burning in fingers and feet, pins needles, low heart rate (46 at rest) high BP 177/95, high Cholesterol. I cannot do any exercise now as I feel like I've have run a marathon. I used to be able to jog 5 miles some years back. Cant do more than 2 without stopping and starting breathless and heavy legged...terrible tummy cramps and now bouts of diareah and constipation especially after eating a main meal....the list goes on...

So my question is can anyone comment on the latest Medichecks below and also what I should be thinking of asking the Endo on Wednesday e.g if she says my problem is not thyroid which symptom can i state which is unique to thyroid dysfunction.. Im getting quite nervous about it now.

I supplemented 10,000k for 1 month and 5,000k for 2 months to get my Vit D level up last year to 91 and continued with 1000 every other day in Winter. I supplemented B12 and folate up to Christmas but then stopped due to the many blood tests I was having.

Sorry for long post...

Many thanks everyone

Duffy26

ps the reason I ordered the Medicheck is because the Endo did not order T3 or Vitamin D. They would not test so I paid for these (it was nearly the same price as paying for just Vitamin D and T3) thanks

[Ansteynomad]

You are in exactly the same situation I was in five years ago; TSH mid-range, FT4 and FT3 at the bottom of their respective ranges and negative antibodies. My TSH was rising very lowly and had taken seven years to rise from 1.6 to 3. something, while my free hormones levels were uniformly low and I was very unwell indeed. Levothyroxine and then NDT have changed your life.

I would be inclined to stress the fact that your free hormone levels are so low and ask why, if the object of treatment is to get them into the upper part of the reference range, this is being denied to you because your TSH is still within range. Muttering darkly about secondary hypothyroidism might help as well. I never did find out what was really going on with me, but I think there may be an element of a sluggish pituitary not stimulating the TSH to rise. Perhaps that is the case for you. You certainly have some classic symptoms.

Do come back and let us know how you got on.

[Duffy26 in reply to Ansteynomad]

Hi Anstynomayes you sound very similar to me. How did you eventually get to trial thyroxine?..my tsh may never go out of range i fear. I also agree that i might have a sluggish pituitary or hypothalmus.

Just wish i could feel awake,warm and full of zest again 😣. Yes i will post how i get on.

Duffy26

[shaws]

You are hypothyroid as FT4 and FT3 are bottom of range. If you are in the UK, doctors have been instructed not to prescribe until TSH is 10. In other countries patients are prescribed when it goes over 3. This is from TUK and I think you will probably realise that few doctors know very much about the clinical symptoms of hypothyroidism (they used to only diagnose us through clinical symptoms before they introduced the blood tests).

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

thyroiduk.org.uk/tuk/about_...

[Duffy26 in reply to shaws]

Hi shaws. Yes you did reply to me last year when i first joined but i think because i told my doctor that ive had enough and im going to self trial she agreed to refer me to endo first. Doc said she might just instruct a trial. But if she does not then i think i am going to bite the bullet and try something myself with the help of this forum. My nana had tbyroid issues and im sure she took something for it but that would have been many years ago.

Thanks

Duffy26

[shaws in reply to Duffy26]

We cannot go on suffering because a doctor is indecisive. All members are very, very helpful as they've gone through the hoops themselves to get better or diagnosed.

[Duffy26 in reply to shaws]

Yes the members here are so knowledgable. Im glad i found this site 😊.

[SlowDragon Ambassador]

Gut issues and itchy skin......have you had coeliac blood test? If not ask that it be done

Many many people with autoimmune issues are gluten intolerant, but test negative for Coeliac disease

Assuming coeliac test is negative, would still suggest you try strictly gluten free diet.

If coeliac test is positive then you need to remain on gluten rich diet until had endoscopy to confirm

Low vitamin D is common result of coeliac and also low thyroid

Your folate is too low

Your FT3 and FT4 are both too low too

[Duffy26 in reply to SlowDragon]

Hi Slowdragon. I did actually wonder if i am now starting to be gluten intolerant. Something autoimmune is going on. Also feel nauseous more often. i believe i had a Ttg test last year which was negative but the digestive issues are ramping up now and the rheamatologist did IggM,IggA,IggG tests. IggA came back abnormal but not highly abnormal. I did wonder if this is why my vit d, folate and Ft4 and Ft3 are still low. Thing is my nhs area use different kits which show me slightly more in range than Medichecks so i know ive got a bit if a battle on Wednesday. No docs bat an eyelid when i mention tummy issues. 😣

[SlowDragon Ambassador in reply to Duffy26]

Took over 20 years with Hashimoto’s for me to realise gluten was an issue (no gut symptoms)

Tested negative twice on coeliac blood test- 20 years apart. Endoscopy showed definitely gluten intolerant

Only through this forum did I realise how common gluten intolerance is, especially with any autoimmune disease

[Duffy26 in reply to SlowDragon]

ok I will continue to eat normally at the moment and mention it to the endo on Weds. Keeping my fingers crossed..

[SlowDragon Ambassador in reply to Duffy26]

Is this a particular endo off the Thyroid UK list that you are seeing, or just one your GP referral gave you

Many endocrinologist are Diabetes specialists, not Thyroid.

Unfortunately many are not interested in low vitamins or gut connection. Many only consider Coeliac relevant, not gluten intolerance, nor understand connection with leaky gut and prevalence of low stomach acid.

You may find them dismissive of gluten free diet if negative for coeliac.

[Duffy26 in reply to SlowDragon]

Hi. No there were none in my area on the Thyroid UK list. Tthere was a list of 5 to choose from so i chose this lady as it stated she had an interest in thyroid dysfunction. So i guess we will see what happens on Wednesday. Fingers crossed

[SeasideSusie Remembering]

"I supplemented 10,000k for 1 month and 5,000k for 2 months to get my Vit D level up last year to 91 and continued with 1000 every other day in Winter"

Your winter dose was far too low, as you now know. I don't think that would be a suitable winter dose for anyone in the UK.

My level is kept around 150 and to achieve that I need 5000iu daily in winter and 2000iu daily the rest of the year.

We need to test twice year when supplementing to maintain the recommended level, November and April are good times.

With your current level of 55.9 I think you should go back on to 5000iu daily for 8 weeks, then reduce to 5000iu alternate days for 4 weeks then retest. Once you reach 100-150nmol then find your maintenance dose. It may be 2000iu daily, maybe more or less, maybe more winter.

You can do a home fingerprick blood spot test with City Assays for £29

vitamindtest.org.uk/index.h...

Your Folate is dire, you are very nearly deficient. You need to discuss that with your GP who may prescribe folic acid

[Duffy26 in reply to SeasideSusie]

Hi Seasidesusie

Many thanks for the advice. I shall follow this plan from now. Re the folate i had an even lower result last year but the doctor would not give me anything for it. She said it was normal. I did supplement with folate and b12 for a couple of months and then used a basic b vitamin. I stopped after xmas due to having more blood tests. I shall point it out to the Endo tomorrow and see what she says. Thank you for the advice.

[SeasideSusie Remembering in reply to Duffy26]

I would also point out to the endo that your GP said it was normal to have a barely in range Folate level (or was it actually below range then?)

You can actually buy a methylfolate supplement and when your Folate level starts to rise you can change to a decent B Complex like Thorne Basic B, that has a good balance of the B vitamins including 400mcg methylfolate.

If you have any blood tests then you should leave off a B Complex containing Biotin (or a biotin supplement) for 3-5 days because if the assay uses biotin then the results will be skewed.

[Duffy26 in reply to SeasideSusie]

Ok yes i will. Last years result was below range for folate with Medichecks. Problem is our nhs labs in East use a different assay/kit which shows my results slightly higher in range but still lower end . This is why i end up being told normal,normal, normal etc...tomorrow i will be stressing that i want help regarding continuous symptoms not just blood test results (particularly with the thyroid tests!)...