Starting over again - please help if you can - Thyroid UK

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Starting over again - please help if you can

mouldylocks profile image
7 Replies

I've looked for help from the kind people of the group in a piecemeal way and have ended up, despite reading lots of old posts too, dazed and confused. I'm reposting the full results in the hope of finding my next steps to better health and a better life.

THYROID STIMULATING HORMONE 4.32 mIU/L (range 0.27 - 4.20)

FREE THYROXINE (FT4) 13.2 pmol/L (range 12.00 - 22.00)

TOTAL THYROXINE(T4) 81.5 nmol/L (range 59.00 - 154.00)

FREE T3 3.91 pmol/L (range 3.10 - 6.80)

THYROGLOBULIN ANTIBODY 11.900 IU/mL (range 0.00 - 115.00)

THYROID PEROXIDASE ANTIBODIES 13.3 IU/mL (range 0.00 - 34.00)

Vit D3 - 51 nmol/L

Vit D2 - <5 nmol/L

Comment: 'Vit D = D2 + D3, >50 nmol/L sufficient for most people'.

FOLATE 15.8ug.L (range3.80 - 9999.00ug/L)

B12 439ng/L (range 197.00 - 771.00ng/L)

FERRITIN 47ug/L (range 30 - 4000ug/L

Interestingly, Haemoglobin 119g/L (range 120.00 - 150.00g/L) with a possible cause cited as hypothyroidism.

Given the antibodies it appears I'm not Hashi's - my mother was hypo without Hashi's, so possible genetic cause?

From my reading on the site I'm thinking NDT would be most appropriate for me, which I know I would need to buy online. Is there anything to absolutely avoid, and are Thiroyd and Thyroid-S good alternatives?

Once I begin, at what dosage would be a good starting point and what intervals between increasing? How frequently should I get tested to check levels (privately of course)

And what vitamin supplements are indicated, if any, and in what form (liquid, methylated, dosage etc.

I know this is a lot to ask, and that replies will be based on personal experience and not medical qualifications but I would be so grateful for help in finding my way through this maze.

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mouldylocks
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7 Replies
Jazzw profile image
Jazzw

Are you taking any thyroid medication at the moment? What has your doctor said about your results?

mouldylocks profile image
mouldylocks in reply to Jazzw

No, I'm not on any meds at present. He was kind but unimpressed with the (Thyroid) results. The saying 'if you hear hoofbeats, look for horses not zebras' didn't apply. My symptoms could be caused by numerous individual causes, but collectively more like Hypo given my family history I think.

FancyPants54 profile image
FancyPants54 in reply to mouldylocks

Good grief! "Kind but unimpressed." I had one of those. Ignored the lab flagging up TSH over 4.3. You are obviously hypo. Your TSH is too high. Your Free T3 and Free T4 are barely scraping the bottom of the barrel. What are these doctors on?! We need more hypothyroid GP's. Ones who are suffering themselves. Because the rest just seem to ignore this.

I can't advise you on what to do next because I'm relatively new to Levothyroxine. But I'm sure someone else will come along tomorrow and help out.

Treepie profile image
Treepie

ask@ SeasideSusie for vitamin help .Not sure about adding D2 and D3!

SeasideSusie profile image
SeasideSusieRemembering

Vit D3 - 51 nmol/L

Vit D2 - <5 nmol/L

Comment: 'Vit D = D2 + D3, >50 nmol/L sufficient for most people'.

D3 and D2 are added together to give a total, so yours is somewhere between 51 and 56, the <5nmol/L result that's been given for D2 is less than useless but D2 is fairly insignificant anyway.

The Vit D Council recommends a level of 100-150nmol/L.

I would suggest you supplement with 5000iu D3 for 8-10 weeks then retest.

Once you've reached the recommended level then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

There are important cofactors needed when taking D3

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

I have mentioned the timing with thyroid meds in the event that you may be prescribed Levo.

**

B12 439ng/L (range 197.00 - 771.00ng/L)

This is on the low side but not dire.

An extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

I keep my level at around 1000 (I am in the older age group). Sublingual methylcobalamin lozenges are what's needed if you wish to self supplement, 1000mcg will be fine, along with a good quality B Complex to balance all the B vitamins.

Now my level is around 1000, I supplement a couple of times a week rather than daily and that maintains my level.

FOLATE 15.8ug.L (range3.80 - 9999.00ug/L)

I do have an issue with this stupid range, it used to be something like 10-42 or 9-60. Folate is recommended to be at least half way through it's range, which of course is impossible with the range given there. At least it's not deficient, it might be fine, but the B Complex you need when taking a B12 supplement will take care of any possibility that it might be low. Stay away from high dose B Complex such as B50, B100, etc, they are not particularly well balanced. I like Thorne Basic B.

**

FERRITIN 47ug/L (range 30 - 4000ug/L)

For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

**

THYROID STIMULATING HORMONE 4.32 mIU/L (range 0.27 - 4.20)

FREE THYROXINE (FT4) 13.2 pmol/L (range 12.00 - 22.00)

TOTAL THYROXINE(T4) 81.5 nmol/L (range 59.00 - 154.00)

FREE T3 3.91 pmol/L (range 3.10 - 6.80)

Over range TSH and low in range FT4/FT3 with Total T4 being low in range. All points to hypothyroidism but you are unlikely to get a diagnosis until TSH reaches 10 here in the UK unfortunately.

THYROGLOBULIN ANTIBODY 11.900 IU/mL (range 0.00 - 115.00)

THYROID PEROXIDASE ANTIBODIES 13.3 IU/mL (range 0.00 - 34.00)

Antibodies nice and low, no sign of autoimmune thyroid disease (Hashimoto's).

**

You are very unlikely to get a diagnosis despite your over range TSH, if it were another country you would be diagnosed hypothyroid when TSH is over 3. The only possibility, with an open minded GP, is Subclinical Hypothyroidism. From cks.nice.org.uk/hypothyroid...

If TSH is between 4 and 10 mU/L and FT4 is within the normal range

◾In people aged less than 65 years with symptoms suggestive of hypothyroidism, consider a trial of LT4 and assess response to treatment 3–4 months after TSH stabilises within the reference range — see the section on Prescribing information for further information on initiation and titration of LT4. If there is no improvement in symptoms, stop LT4.

◾In older people (especially those aged over 80 years), follow a 'watch and wait' strategy, generally avoiding hormonal treatment. If a decision is made to treat, prescribe LT4 and recheck TSH two months after starting and adjust the dose accordingly.

◾In asymptomatic people, observe and repeat thyroid function tests (TFTs) in 6 months.

Follow up of people with SCH who are started on LT4

◾Reassess symptoms on treatment. If symptoms have improved, lifelong treatment may be considered. If symptoms have not improved or if adverse effects are reported, stop LT4 after a 3–6 month trial.

◾Once TSH has normalized, TFTs should be measured at least annually thereafter.

◾If lipids were elevated at initial assessment, recheck to see if they have improved adequately or the person needs therapy for dyslipidaemia — for more information, see the CKS topic on CVD risk assessment and management.

Follow up of people with SCH who are not started on LT4

◾If TSH has normalized without treatment, no further testing is needed if the person is asymptomatic, has negative autoantibodies, and does not have a goitre.

◾If TSH remains elevated, arrange repeat TFTs every 6 months for the first 2 years and then annually.

◾Arrange annual TFTs in people with SCH who are thyroid peroxidase antibody (TPOAb) positive or have a goitre.

◾Arrange repeat TFTs every 3 years in people with SCH who are TPOAb negative.

◾If lipids were elevated at initial assessment, recheck these to see if the person needs treatment for dyslipidaemia — for more information, see the CKS topic on CVD risk assessment and management.

**

You could tell your GP that you have taken advice from NHS Choices recommended source of information regarding thyroid disease (which is ThyroidUK), and they have suggested a trial of Levothyroxine in accordance with the above. Do not mention the internet or forums, they don't like that, but they do find it harder to argue with NHS Choices recommendations.

mouldylocks profile image
mouldylocks in reply to SeasideSusie

I can't tell you how much I appreciate your advice. It really is so kind of you to spend time just helping people. Thank you, and I hope your kindness is returned to you 10 fold.

bristolboy profile image
bristolboy in reply to SeasideSusie

Fantastic advice, SeasideSusie - you're so generous with your time and knowledge. I definitely echo your advice about not mentioning the internet or forums to a GP - I wish I'd thought of that before my recent "encounter" with my young GP - we definitely didn't part on good terms, and I won't be seeing her again (I doubt she'd agree to see me anyway!!!). This just goes to show how much the frustration of dealing with the NHS on hypothyroidism can negatively affect an otherwise calm, polite, well-educated gentleman :-)

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