Endo F/up soon,how best to handle criticism of TSH being 0.083 (0.27-4.2) please.

[Gillybean1]

Hello again Everyone,

I am dreading my F/up with a 'gestational diabetes' endocrinologist this week. I am neither diabetic or pregnant (ha! at my age).

A very nice lady but knows nothing of NDT, very little on Hashi's,and obsessed with science based evidence.

I am currently taking 1 3/8 grain of NDT daily, TSH 0.083 (0.27-4.2), FT4 15.2 (12-22), FT3 5.13 (3.1-6.8) results after 6 weeks this dose.

I am freezing cold,ongoing gut pain, fatigue ,tinnitus etc etc etc you all know too well, and about to increase another 1/8 grain. I was diagnosed with Osteopena in 2012 (probably years of chronic malabsorbtion) long before I started first medicating in 2015.

My pulse is 65-70 my BP very low at typically 90/58 or 100/ 62, Ferritin low side in range. Vit D, !2, Folic , FBC all good. Chloride low ,now taking electrolytes. And yes I still feel very unwell.

How do I handle her please?, is there any difinitive paper that says although it is not ideal to have a non- detectable TSH but some patients who have tried 'everything' may need to suppress TSH totally in order to have some quality of life?

I too accept this is not ideal, ive lost everything and I am still searching for the missing piece.......which may turn out to be 'functional B12 deficiency'.......wish me luck with that one.....no one is willing to trial B12 for 3 months just to see if its the missing piece, if its the one thing after all these years of tests after tests, costing thousands and wasting everyones time.

Apologies for the rant. Every best wish,

G.

[SlowDragon Administrator]

no one is willing to trial B12 for 3 months just to see if its the missing piece,

So why not just start self supplementing a good quality vitamin B complex

How low is ferritin?

Are you saying vitamin D is 2nmol?

Exactly what are you now taking ?

Are you also taking daily magnesium

[Gillybean1 in reply to SlowDragon]

Hi SlowDragon,

Thank you for taking the time to reply. I have been taking good quality B complex for 25years, and I often wonder if doing so I have masked a 'functional B12 deficiency' as my serum levels have always been high.

I took a sublingual adeno/methyl B12 which was ok, did better on a sublingual Hydroxo B12, but reach a plateau. My previous Endo said I probably would only get so far sublingualy, but couldnt offer B12 trial for 3 months and referred me just to verbally ask his Haematology colleague. This consultant said he would trial B12 if my MMA and Homocysteine was elevated.

At great cost I did the tests as stated, stayed off B12 for 4 weeks (nightmare ,neg symptoms exacerbated) Results unremarkable, because then I was told the tests were invalid as one has to be off B12 for 4 - 6 months to be accurate....I simply couldnt go that long without B12. I dont believe I have PA, but I do think there is and issue,gene fault call it what you like in the liver (like my DIO2 + issue found) but I cant prove anything. A b!2 trial would rule this thought in or out. Yes I could DIY, but I would rather do it by the book so to speak, and have it on my notes, especially if it was a success.

Magnesium 0.97 (0.77-1.03)

Vit B12 Active >150 (37.5-150)

Vit D 98 (50-200)

Folate 19.98 (>3.89)

Iron 17.8 ( 5.8- 34)

Ferritin 77.8 ( 13-150)

Its very difficult with chronic gut pain to eat very well daily. On the days I am not in a flare I eat proteins and fats and take Betaine and Enzymes, overal for the amount of food I do it, clearly I dont absorb well, as I am very thin, wasted muscles, ridged nails, weak etc. GF,DF,SF, no grains tolerated now except quinoa, rice is a no no now, massive hive reaction, Can eat sweet potatoes and potatoes suprisingly. Just dropped eggs 3 months ago and had a massive improvement, but fats are a nightmare....pity as I would gain so much heat and energy.

Meanwhile, I am very anxiuos about the endo follow/up, I feel so bullied at these rather than supported.

Every best wish to you, G.

[Hidden]

There is lots of interesting info on the brilliant Paul Robinson's website about how TSH suppression from exogenous hormone supply does not carry risks of Atrial fib, osteoporosis or stroke as would be implied with endogenous hormone supply prob such as Graves'.

See research paper below -

sciencedirect.com/science/a...

[Gillybean1 in reply to Hidden]

Hi LucyYoga,

Thank you for taking the time to reply. Yes I know Paul Robinson,s site and books well. There is no way this Endo would take any info from PR sadly, despite Paul being respected by the Oxford Research team on thyroid disease.

Thank you for the Science Direct paper,that could help.

I will hang in there, its just exhausting when they pick out the low TSH continually.

Every best wish to you, G

[Hidden]

And hang in there- on 1.75 grains on NDT I was still bedridden with pain and fatigue ...

[Gillybean1 in reply to Hidden]

Thank you LucyYoga, I have revisisted Paul Robinsons site thanks to your nudge and found a recent post on the low TSH issue, so thank you.

Follow up was worse than I expected, I have been dismissed as a time waster to the Consultant and to the NHS, she had nothing else to add except that I am overmedicated and so my problems cant be a thyroid issue, and would refer me back to my GP She and the NHS do not approve nor recognise the use of NDT and its efficacy, its out of her remit, her words. I asked for other immune tests ie liver, smooth muscle,kidney,adrenal etc re ongoing gut issues to be checked and was told " no,if they are positive what are you going to do with that info, we dont do anything" I asked if she could trial me for B12 for 3 months for 'functional B12 deficiency at cell level' she said no to that as she knew nothing abot it, so I asked to refer, she said she knew of no one.

I asked why am I freezing in July, why is my body temp 35.6-36.4, fatigued,hair loss, low BP , TPO ,TG ,DIO2,Hashi if its not a thyroid issue, She said she had nothing further to add and that medicine cant always explain answers.She got cross when I say truly politely that my TSH would be low if I took T3 but that this year I felt my thyoid seems to be changing as my T4 has dropped from 18 to 15.6.....no response

I told her now she has made me feel totally abandoned,unsupported,and alone, can she refer me to someone who may be able to help. She clearly crossly said I dont know I will look into it. Very unkind

Feeling pretty worthless tonight, having sold everything, lost everything to resolve this, it hurts as many many know on this forum

Every best wish to you, G.

[Hidden in reply to Gillybean1]

Gillybean I’m so sorry- this is totally disgusting and it’s outrageous you’ve been treated this way. However sadly I’m not suprised as this kind of nonsense from NHS seems to be commonplace.

I know too well the collateral damage of this disgusting disease to career, relationships, finances etc. I’m sending you a hug. Don’t give up x

[Gillybean1 in reply to Hidden]

Bless you G x I dont think I will deal with it at the moment, but I will, if only for other people's sake.

[humanbean]

I am freezing cold

Just a personal anecdote, but I discovered that my feelings of being cold all the time reduced a lot when my iron and ferritin improved.

However, improving iron/ferritin didn't actually raise my body temperature, which for most of my adult life has been around 96°F or 35.6°C, but has increased (very slowly) to nearly 97°F or 36.1°C with improved levels of nutrients and thyroid hormones.

Although it was improving iron that helped me I wouldn't be surprised if improving nutrients generally helped some people to feel warmer.

[Gillybean1 in reply to humanbean]

Hi Humanbean,

Thank you for taking the time to reply. I couldnt agree more, I too find improving iron/ferritin levels helps me 'feel' warmer, and that eating everything is key,,,therein lies my problem, my gut struggles with protein and fats, constant inflammation, so I eat tiny amounts when I can, and use Betaine and enzymes when not in a flare up, I also realise that B12 plays a significant role in the digestion of proteins and the metabolism of fats.

The drop in temperature at the weekend from one day at 28 degrees to yesterday being 18 degrees plays havoc, shivering cold, worse digestion = more pain, and my temperature dropped from the usual 36.5 ish to 35.4........frustrating.

I would love to eat more protein, more of everything really,my muscles are wasted from malabsorbtion and fatigue.

Every best wish, and thank you again, G

[tattybogle]

Some evidence on here:

healthunlocked.com/thyroidu... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk

some more on here:

healthunlocked.com/thyroidu.... tsh-is-just-the-opinion-of-your-pituitary-about-your-dose-but-your-pituitarys-opinion-is-a-bit-warped-once-you-take-thyroid-hormone.

[Gillybean1 in reply to tattybogle]

Hello Tattybogle,

Thank you for taking the time to reply and for the info duly filed.

F/up was worse than expected today. I was told I was overmedicated (T4 15.8, T3 5.6, TSH 0.08) and that she had nothing to add other than this is not a thyroid issue (symptoms of freezing cold,low BP,low temp 35.6- 36.4, norm pulse, fatigue, Dio2+, Hashis,hailoss, gut issues!) as I am clearly overmedicated, and that she and the NHS do not approve nor recognise the efficacy of Armour NDT and that it was a waste of her time and the NHS's to keep me as a patient on F/up. etc etc and more to exhausting, demoralising to go into, im too upset. I did say that she has made me feel more alone, isolated and abandoned.

No doubt she will send a stinker letter to my GP saying that I cant be helped and doing my own thing. Very unkind, very unfair.

I asked her twice not to abandon me, and to refer me to someone whom may be able to help as she said it was beyond her. I will have to wait.

I find it extraordinary that NDT a medicine used for 100 years until Levo in 1987 get harshly dismissed today. The FDA are extremely strict on efficacy of their medicines, nothing gets past that doesnt meet the standard including Armour.

Every best wish to you, G.

[tattybogle in reply to Gillybean1]

sending you a

((( hug ))) Gillybean ....sounds like you could do with one after that xx

[Gillybean1 in reply to tattybogle]

thank you, appreciated. x

We have all had this nightmare at some stage here.

Kind regards. G.

[serenfach]

If she starts on the TSH is too low stuff, I always make a rather grand sweaping gesture and say I have always been like that, it is just me, ha, ha, and here I still am!

If she persists, just tell her other Endo specialists have tried raising the TSH and made you ill, and you would rather not discuss that any further.

I so hope you find your "golden key" to good health. Mine has gone missing a while back.

[Gillybean1 in reply to serenfach]

Thank you Serenfach for taking the time to reply.

The follow up was worse than I could have imagined and the Consultant has was her hands of me, saying i am overmedicated and this is not a thyroid issue, she has nothing else to add except I am now wasteing NHS time and her time.

Feeling pretty low,pretty abandoned, and demoralised.

Every best wish to you G.

[serenfach]

I am so sorry - I know just how you feel as I have been there. They think they are Gods, its their world and we are just inconvenient. I remember saying I would just go away and die, but it did not make any difference.

Keep battling on, I know how difficult it is when you are feeling ill, and there is nothing I can do but tell you there is a whole army of thyroid women behind you, ready to help. Hug.

[Gillybean1 in reply to serenfach]

Thank you for your kind words G