How long till improvement

[BlueKeith]

I've had my dose of levothyroxine increased from 75 to 100mcg. Been on the increase since a week ago. I had blood tests a couple of month ago as was getting night sweats and slightly tired. Last 2 weeks had worst constipation of my life. Nearly hospitalized. Feeling freezing Cold. Exhausted. Permanent bowel cramps. Doctor said was the hypothyroidism probably all of it. Any one know how long roughly it should take to feel the benefits of the increase?

[Jaydee1507 Administrator]

Well done on getting an increase in Levo. I suspect you need a few more before you get to where you need to be. In the mean time be working on low vitamin levels - ferritin, folate, B12 & D3 which will also help. Have you had them tested?

Levo is a storage hormone so likely to begin to feel something in 2 weeks but some feel worse before they feel better. You're still on a pretty low dose for a man.

Did they give you anything for your bowels? Magnesium can help.

[BlueKeith in reply to Jaydee1507]

I was surprised the doctor said we need to increase your levothyroxine as all other times very reluctant when I've asked myself. Hopefully things might start moving next week. I asked about vitamins but doctor said if I eat a balanced diet I should be fine but if symptoms persist then could look at that. Which magnesium is best?

[Jaydee1507 Administrator in reply to BlueKeith]

You do need to INSIST your GP checks your key vitamins. When hypothyroid we get low stomach acid which means despite a good diet we get low vitamin levels as we don't absorb them well. Low vitamin levels may well be playing into your constipation issues.

GPs really just treat numbers on a piece of paper and need prompting to get us actually well. You need to become your own health advocate at the GPs with hypothyroidism. Do not accept what they say as gospel.

[BlueKeith in reply to Jaydee1507]

Thanks jaydee. I am starting to realize this.

[shaws Administrator]

Unfortunately, when we're first diagnosed the majority of us had never heard of a dysfunctional thyroid gland.

Unfortunately, too, is that the majority of GPs don't seem to have any knowledge about clinical symptoms nor how to slowly increase our dose.

Before blood tests were introduced GPs usually diagnosed us upon our clinical symptons alone and we were given a trial of 'natural dessicated thyroid hormones' and dose was gradually increased until we were symptom-free.

Unfortuately these have been withdrawn despite it being given from 1892. Levothyroxine (T4) was the replacement.

Our bodies usually indicate whether we are on too low a dose, or too high a dose (which is rare I believe) and prescribed levothyroxine which should be gradually increased until we're symptom-free. Levothyroxine is also named as T4 and Liothyronine as T3. T4 is inactive and has to convert to T3 the active thyroid hormone.

[BlueKeith in reply to shaws]

I've heard this many time about increasing levothyroxine until symptom free but my nhs doctors seem very reluctant to increase and so was surprised how my doctor had changed their tune this time .

[shaws Administrator in reply to BlueKeith]

I could not improve my symptoms/health on levothyroxine (T4 only and should convert to T3).

The original thyroid hormone replacement was produced in 1892 and it saved lives from then on. and it was called Natural Thyroid Hormones. This was withdrawn sometime ago.

[BlueKeith in reply to shaws]

Thanks

[BlueKeith in reply to shaws]

Think this is going to be ongoing for a very long time . Not as simple as that very first doctor who diagnosed me stated I'm sure.

[archipoeta in reply to shaws]

It is still made, but you have to find a doctor who will prescribe it. Many of us buy our own.

[waveylines in reply to shaws]

Shaws natural dessicated thyroid extract has not been withdrawn from the NHS. Armour & Erfa is still available on the NHS Formulary list. I know this because a pharamcist tols me this. However it is restricted and may only be recommended by a NHS Endocrinologist. Although it's hard to get it on the NHS it is important people know it is there. I have Armour prescribed on the NHS and have done so now for over 10years. I know of two other people who also have it on the NHS. I believe you can look it up (not sure how) and see how many patients it's prescribed for or how much is spent on it. I think it was SlowDragon or some other clever person who shared a link sometime ago. It maybe that certain areas the LCG have refused it I'm not sure.

[shaws Administrator in reply to waveylines]

Thanks for your response but this is what I've read.

sps.nhs.uk/articles/review-...

[waveylines in reply to shaws]

Wow that's a scary document. Especially as its not based on facts! Eg There is no proven link to osteoporosis! It's true its not considered routine treatment anymore but Endo can & do prescribe it. Liothroinine doesn't suit everyone either......which the article doesn't even mention it.

It doesn't say it NDT can't be prescribed but only an endo can. I got dent back to see an endo a few years back to review my ndt but luckily he backed me.

Honestly it reads like a piece of propaganda. Eg.... product content can vary. NDT products have to meet strict criteria for their active content, like synthetic drugs do too....& frequently the symptoms their drugs ha e recalls due to inappropriate active content. Very misleading. Lol....

[tattybogle in reply to shaws]

shaws / waveylines it may be like T3 ie access is different in different CCG prescribing areas.. certainly in my area NDT is coded as 'black ' ie prescribing is not supported ... there may perhaps be some patients on it here who have been on it for years, but getting a new prescription for NDT in lancs and south cumbria CCG /ICB would seem to be 'out of the question' based on this:

lancsmmg.nhs.uk/medicines-l...

"What the colour codes mean :

Black medicines

Black

NOT recommended for use by the NHS in Lancashire.

Includes medicines that NICE has not recommended for use and terminated technology appraisals, unless there is a local need.

This category includes medicines for which there is insufficient evidence of their effectiveness."

[waveylines in reply to tattybogle]

Its such a nonsense though isn't it Tattyboogle.....lack of evidence? It's been used successfully for over a hu dred years!!! I despair.....

Thing is its not about making patients well but keeping them ill so they have to take more and more meds......profits for big pharma!! That's the name of the game.....

[FancyPants54 in reply to tattybogle]

Armour Thyroid prescriptions show on that Open Prescribing web site where you can see how many prescriptions for T3 or NDT are prescribed each year in your area. I checked my area a couple of weeks back and there are a few prescriptions listed in my area.

[tattybogle in reply to FancyPants54]

Yes it's very useful to see who's prescribing what ... bear in mind that prescriptions of T3 (or NDT) for existing patients in a particular Clinical Commissioning Group region (now Integrated Care Board's) who may have been prescribed it for a long time and been approved by endo to stay on it ....... does not mean that ICB region are currently allowing prescribing for any new patients.

[SlowDragon Administrator]

Constipation

Drink plenty of water

Calm vitality magnesium powder is extremely effective.

uk.iherb.com/pr/natural-vit...

start with level teaspoon in warm water. Drink while still fizzing

Increase dose each evening until you get desired effect…..too much can cause diarrhoea

Any magnesium must be at least 4 hours away from levothyroxine

Best taken bedtime as helps improve sleep

(or afternoon if take levothyroxine at bedtime)

You absolutely MUST get B12, folate, ferritin and vitamin D tested by GP …..or test privately

Are you currently taking any vitamin supplements?

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

thyroiduk.org/getting-a-dia...

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Come back with new post once you get vitamin results

On levothyroxine we MUST have Optimal vitamin levels

Vitamin D at least over 80nmol

Serum B12 at least over 500

Active B12 at least over 70

Folate and ferritin at least half way through range

Which brand of levothyroxine is 100mcg tablets

Which brand was 75mcg tablets

Have you had coeliac blood test done yet

[BlueKeith in reply to SlowDragon]

Thanks slow dragon . I used to use 50mcg accord and 25 wockhardt. I now use 100mcg accord. Thanks for the magnesium recommendation. Will order some most definitely. Lastly you can't recommend a pain killer to get me through tomorrow at work can you. My bowels are excruciating.

[SlowDragon Administrator in reply to BlueKeith]

I think you should see GP tomorrow (or call 111 )

nhsinform.scot/illnesses-an...

[SlowDragon Administrator]

results from previous post

Tsh 7.5mu/L range (0.35-4.7)

T4 level 10 pmol/L (7.8-21.0)

You were left far too long on just 75mcg levothyroxine

Approx how much do you weigh in kilo

Likely to need further increases in dose over coming months

On levothyroxine TSH should always be under 2

Most people when adequately treated will have TSH around or under one

Most important results are always Ft3 followed by Ft4

Aiming for Ft3 at least 50-60% through range and usually Ft4 higher

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

[BlueKeith in reply to SlowDragon]

I am now 79kg in weight. I have drastically lost weight from 86 kg 2 month ago which is strange considering I'm hypothyroidism but constipation puts you off food. Thanks for the tsh advice. I now demand results and next time will want increase if tsh above 2. Next step will be vitamins. I've got to.

[SlowDragon Administrator in reply to BlueKeith]

79kg x 1.6mcg = likely eventual daily dose 125mcg Approx

A few people might need slightly less, some will need more

Meanwhile you need coeliac blood test

A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

Hashimoto’s and leaky gut often occur together

Both dairy and gluten are inflammatory foods

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link) 

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies 

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first 

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

[BlueKeith in reply to SlowDragon]

Thank you

[MariyaPetrova]

Normally takes between 4 and 6 weeks to feel the results on 100% where at week 4 or 5 you can take and you must take another blood test to check if the 100mg works .For 1 year I had to increase my dose 3 times 😩 very frustrating, but now with the 125mg it's better apart of the moodiness quite often.

[BlueKeith in reply to MariyaPetrova]

Yeah think I may need another increase or 2

[ICE187]

Each person is different. I felt the effects of Levo 2 weeks after I started. I relapsed with symptoms every 5 weeks until my dose was high enough for me. It took me 8 months before the majority of my symptoms went completely away. I had to fine tune my diet to figure out the trigger for my new symptoms after levothyroxine treatment which were digestive issues. Once I cut out ALL gluten, my digestive issues went away.