Bloods normal again and I'm not! Endocrinologist appointment Saturday been waiting 3 months for appointment! Any advice thanks

[kafe1]

Hi all any advice please, as again my bloods have come back normal but I have many symptoms and a long history including m.e then graves disease. (have posted this history).

Ive got a new consultant in past 18 months who put me on fludrocortisone for adrenals felt better for a little while but then symptoms of tiredness and joint pain feeling cold have worsened .

He is sympathetic but I'm trying to educate him with the bits of information I'm finding out and not sure where to start for the best. Been ill a long time and Trying to get it sorted but when v tired just end up giving up .... Then starting the whole process again! really need to get somewhere now....

Tsh. 0.8. (0.3-5.5)

ft4. 15.1 (12-22)

ft3. 3.8. ( 3.1 -6.8)

Tpantibodies < 5 ( <34)

Ferritin 38. ( 11-307 )

folate >20. (3.1-20 )

B12 683 (120-650)

Vit d 130 (50-144)

I'm 41 and apart from what these Bloods say I'm falling apart! I'm v interested in what I'm reading 're dhea and ndt.

Any help so so appreciated. Thanks

[Clutter]

Kafe, antibodies are low so you don't have autoimmune thyroid disease (Hashimoto's) as a cause of hypothyroidism.

If FT4 was higher in range FT3 would probably be better. Low FT3 is what causes hypothyroid symptoms. Ask for a dose increase. It will lower/suppress TSH but some need it suppressed to build FT4. See Dr. A.Toft's comments in Treatment Options in thyroiduk.org.uk/tuk/about_... If you think it would be useful to have the full article to show to your endo email [e-mail]

Ferritin is low. Optimal is halfway through range. Supplement iron and take each tablet with 500-1,000mg vitamin C to aid absorption and mitigate constipation.

Folate, B12 and vitD are excellent. Are you supplementing?

[kafe1 in reply to Clutter]

Hi clutter just wrote a long reply and lost it ! Sounds like me ..

Many thanks for your reply it's great to hear something is working. I take supplements on and off since sick 16 years ago but it's been v hit and miss so not sure why b12 is good, try and eat meat am gluten free now as was getting symptoms then got diagnosed...vitamin d I was deficient 2 years ago and I upped it really successfully with an oral vitamins spray. It's also kept at that level over winter months. I take b6 sometimes and vit c...I really struggle to raise iron ove had supplemental iron all this time on and off and its never altered by my levels bbutthen u were saying my folate is good so not sure how that's made !

Thanks for your comment on the tthyroid panel, I'm not on any thyroid meds at present but will be discussing this with the endocrinologist Saturday.

Can I ask is that t3 level low? If so what should I be trying to request...t3 t4 or both...I know that what works for one doesn't necessarily for another. Ten years ago I was on block and replace for graves disease and it raised me from the dead only

25 mg Levo. I had been housebohousebound 4 years then was able to walk again. Sad thing is, there was then a gradual slide back into compensating abd not feeling well before falling off a cliff 2 years ago and feeling as bad as I did 16 years ago! Trying to avoid a repeat of that cycle x

[Clutter in reply to kafe1]

Kafe, I'm sorry, I assumed you were already on medication and thought a dose increase might help.

I think you may have a bit of a struggle getting treatment, which is usually Levothyroxine, as your FT3 is low, but is within range. Be sure to mention you have Graves because the antibodies may be blocking the TSH receptors and preventing TSH from rising to stimulate FT4 and FT3 and your TSH set point may not have recovered from when you were previously hyperthyroid.

G-F can improve absorption of nutrients from food which may be why your vit levels are good. Folate is usually obtained from green leafy veg.

[kafe1 in reply to Clutter]

Thanks for the information clutter.. yes I think I'm in for another battle but I have to try as I can't accept the cfs m.e route which leaves me nowhere. There's a vv interesting article on the tuk website from Dr Lowe about the link between fibromyalgia and hypothyroidism he thinks there are many similarities and that thyroid replacement therapy helps...there's s study there also. This gives me some hope. Can u explain any more 're the receptors..I think that is something for me to pinpoint somehow... also how do people find out if they are converting there tr to t3 is there a test ?

it amazes me how knowledgeable peeps are on here shame we have all been too sick to go into medicine, especially after all this practical experience!

Kind regards x

[Clutter in reply to kafe1]

Kafe, I only know TRab can stimulate TSH production which is why patients become hyperthyroid and it can later block receptors so TSH doesn't rise to stimulate FT4 when FT3 is low.

Dr. Lowe found a link with low thyroid and fibromyalgia and found thyroid replacement helpful in treating his fibro patients.

It's ironic how many non-thyroidal conditions are successfully treated with thyroid hormone replacement while hypothyroid patients struggle to get a diagnosis and treatment.

If a person has low TSH with high FT4 and low FT3 that indicates a lack of conversion.

[kafe1 in reply to Clutter]

Many thanks for your reply, I'm not sure I think my tsh as been borderline for years at the low end but t4 in the middle and a lowish t3 ...I will ha e plenty to ask endocrinologist

Yes it seems mad s. Many peeps sick with endocrine problems and related conditions with little or nothing done for many years. I've Bern sick 16 years and real sick of getting fobbed off.. I lost a lot of life and am trying not to lose anymore than necessary to get well x

[kafe1 in reply to Clutter]

Hi clutter Thanks I wrote a reply and now see it hasn't come up . Yes I think I could be in for a battle,saying that I've read interesting information on tuk website from Dr Lowe about the link between fibromyalgia and hypothyroidism he thinks there are many similarities. I do aagree as the small but if levo I had when on block and replace raised me from the dead.... Thyroid runs in the family...

What you were saying about receptors sounds interesting and something I've seen somewhere.. van u elaborate...perhaps how this shows up or doesn't in the blood s .. I've also read a little on poor conversion problems and rt3 still a little confused about how to test and then important be treated,, both could be possible scenarios for me....

Many thanks for your time x

[Clutter in reply to kafe1]

Kafe, T4 is converted into T3 and rT3. rT3 is a natural brake on T3 levels rising and causing hyperthyroidism. High rT3 can occur in unmedicated people but I think it is rare. It more often occurs when thyroxine builds up and doesn't convert to T3. Sometimes stopping thyroxine medication and taking T3 only for 3 or 4 months reduces rT3 but sometimes it can be necessary to stop thyroid meds altogether to allow it to clear. rT3 testing is available via Blue Horizon and Genova but is rarely done on the NHS although Southampton Hospital is apparently trialling it.

[kafe1 in reply to Clutter]

Great thanks for explaining that, I am v much hoping he will trial me on a low dose due to my symptoms...I'm hoping. Gonna try and get some sleep. Bless u for your time

[faith63 in reply to kafe1]

I was thinking that maybe you have a reverse t3 issue. But finding out why is a good idea tho. Maybe a trial of t3 meds..if you can find them, would help.

[faith63 in reply to Clutter]

Kafe and Clutter..it is very common to have a high rt3, even when not on thyroid meds, due to illness. It often shows up with Type 2 Diabetes, Cushings, Fibromyalgia, Food Sensitivities and allergies, eating foods like Soy, chronic Inflammation, Anemia ....so many illnesses. My son has it due to food sensitivities. I have it due to Hashi's., before meds.

[kafe1 in reply to faith63]

Hi Faith and thanks v much for your post. If rt3 is suspected and needs to be ruled out how is this done. I've seen some rt3 bloods posted on here so presume testing is possible. I DoD try t3 onlly for a v short time but I wasn't clear what I was doing and was left with skewed results and felt it wiser to stop at that time than continue. If had a saliva adrenal panel done showing I was low in cortisol.. I had some isocort tablets for short time 2 months again came off them when felt I didn't know what I was doing. I'd u click on kafe1 you ggetmy posts and history. I'm now on fludrocortisone for adrenals and wonder that if that has done some work to stabilize me and now I need thyroid medication as as part of treatment.

any advice v grateful thanks

[kafe1 in reply to Clutter]

Oh dear really losing it just seen its come up ...could have sworn it wasn't there 🐭

[Clutter in reply to kafe1]

Kafe, fret not, it probably wasn't, the site does that sometimes.

[Hidden in reply to Clutter]

is this the same dr toft who changes his mind all the time?

[Clutter in reply to Hidden]

Mrschips, It's Dr. A. Toft, ex president of the BTA. Cryptic response. Would you care to elaborate?

[lorrainecleaver in reply to Hidden]

First time I've agreed with you! He does change his mind according to his audience. Maybe got his eye on a gong in retirement. Ah well, I quite liked this from him.

" Guidelines which

were designed principally for their educational value

are in danger of assuming a medicolegal importance

far beyond that which was ever intended by their

protagonists. Simply because no two patients

present in the same manner, guidelines, by their

very nature, are the antithesis of the art of medicine.

It is to be hoped that the more experienced will

continue to honour guidelines more in their breach

than in their observance. This is surely what the

patient would expect; an holistic approach to his or

her particular problems, not a slavish adherence to

this or that specialist society’s most recent

consensus. A good doctor needs to be eccentric in

thought and deed from time to time if medicine is to

progress. "

Professor Anthony Toft 2007 (!)

Pity he doesn't heed his own wisdom.

[kafe1]

Thanks for finding me ! If not sure what to ask consultants for and which direction to head in. I'm on the fludrocortisone for my adrenal glands but Not on levo...

and am always trying to raise iron with quality supplements with little results I am coeliac only g.free 5 years and have a lot of gut ache trying to digest food!. I did ask endo for help with this but just recommended another supplement.

I agree with your opinion of possible poor conversion or low hormone resistance..

can he test for either of those...?

Is that then what's called secondary hypothyroidism...?

should I ask for levo or t3 ?

It's so good to talk to people who are in the know . How many doctors and so called specialists know sweet f.a no wonder people struggling to get better..

Thanks so much for your time