I GAVE UP.

[Whiterose15]

I will try and be short about my story. It is a snapshot of events whilst I was on Levothyroxine for more or less 25 yrs. I never felt well and was never referred to an endocrinologist. I gained weight, my hair thinned. I had problems not only with my voice, but swallowing food. I had brain fog, acute tiredness, I felt cold even though it would be a warm day. and was often breathless. All the indicators of hypothyroid. I read loads, took info to my G.P as an aid, to no avail.

I had yearly blood tests, for TSH only. And yes I had other tests done privately B12 etc.

I was referred to a language and speech therapist who indicated that I could be allergic to Levothyroxine. By this time I was being prescribed 125 mg. I also tried different Brands of Levothyroxine including Tirosint, but was told by the prescribing GP it was a 'one off' and would not be given another script.

I was put on inhalers, for breathlessness. And had an allergic reaction and had to call an ambulance.

I was on a trip to Mexico and bought Cytomel T3. Oh my, I felt so much better. But I was not able to have T3 prescribed by Dorset Formulary.

I also have Charcot-Marie-Tooth a hereditary motor and sensory neuropathy and muscle atrophy. Through one of the support groups I found out about a specialist CMT in the Midlands. And I asked for a referral. It was through this referral that one of the issues raised, was to have an endoscopy to rule out silent reflux. The attending hospital doctor saw the list of meds I was allergic to, and commented that he would not be surprised that I could also be allergic to Levothyroxine.

From that day, I stopped taking Levothyroxine. I initially went cold turkey, and in hind sight although I felt amazing for a week or so. I started to feel not quite right. So I started back on 100mg and took that every other day for the first week. The second week I did not take a dose for two days and by third week no dose for three days. and so on until I felt able to stop the meds entirely. In the mean time I consulted with a Homeopath. and my acupuncturist.

My latest thyroid blood test dated 24th July 24 is: TSH 5.1 the Range is 0.5-5.0. (Normal Range) Last year when I was about to withdraw from Levothyroxine the TSH was 8.9!

How do I feel. I have lost weight. My hair is not too bad given my age. My nails are good. I don't have the brain fog. I am not so tired to the point I could just fall asleep on the spot. I am not breathless in the same way. And I am no longer on any pharmaceutical medication.

[GlowCoach Administrator]

Welcome to the group.

So when you tested your vitamin levels did you then begin supplementing them to optimal?

We need optimal levels of all 4 key vitamins for our thyroid hormone to work well.

What were your results and have you retested them recently?

How long have you been off Levo?

What time of day was your TSH only test?

TSH varies throughout the day and is highest at 9am or earlier.

Your results are showing that you are hypo.

[Whiterose15 in reply to GlowCoach]

In answer to your questions: I have been off Levothyroxine for 18 months now. According to my GP Practice. I am in Normal Range.

The TSH blood were done at 10 am in the morning. I take various Vitamins and minerals as and when I feel I need them. The daily ones are : Nascent Iodine. NAC Complex. Magnesium. Vit D. B12. Selenium. and Celtic Salt. Other's are as and when needed. I keep a diary on what works and what doesn't. I found I have become more in tune with my own body.

[RedApple in reply to Whiterose15]

'According to my GP Practice. I am in Normal Range.'

If you feel great, then that is fine. It would be really interesting though, to see what your FT4, FT3 and antibody numbers are.

[Whiterose15 in reply to RedApple]

It would Red Apple, but my GP practice will not do another FT4 and they certainly won't do FT3 or antibodies! This is the problem so many of us have with our GP's following their protocols from their governing bodies. This is one reason I have a good homeopath.

[RedApple in reply to Whiterose15]

Indeed, huge numbers of us do our own thyroid testing for this very reason!

[Regenallotment Ambassador]

are you still taking T3 only?

[Whiterose15 in reply to Regenallotment]

I took the T3 for a very short time many years ago. I decided not to continue back then because finding a regular supplier and importing was too problematic. Added to that I didn't want to cause my system any problems either.

[HealthStarDust]

Yes, I am begining think not only are some people allergic to it, but others suffer prolonged adverse reactions which are not necessarily reversed by stopping the levothyroxine either.

How many pharmaceuticals have we been told are safe and there’s no lasting damage and decades later we find that not to be the case for many people?!

[Sparklingsunshine in reply to HealthStarDust]

A long time ago I was prescribed an appetite suppressant, the new wunderkid on the block, it was very effective, combining a healthy diet with exercise I lost a lot of weight and felt great. Unfortunately the drug was found to have serious long term side effects, cardiac arrests and strokes, so was withdrawn and never reissued. That was on the NHS.

[Whiterose15 in reply to Sparklingsunshine]

I was offered that stuff from my GP and declined. It was full or artificial sugars and could cause bowel problems.

[Sparklingsunshine in reply to Whiterose15]

This was in the 90s, Reductil it was called. It was a forerunner to drugs like Wegovy, except it was a daily pill, not a jab.

[Whiterose15 in reply to Sparklingsunshine]

That's interesting. It was Orlistat that I was offered.

[Sparklingsunshine in reply to Whiterose15]

I think thats still around but as you say some very dodgy side effects.

[RedApple in reply to HealthStarDust]

I don't believe it's the medication itself that's the problem. After all, it is a hormone and many millions supplement this and other hormones every day. I've always believed that the problem is with the method of delivery.

With a working thyroid, the hormones are delivered internally, directly from the thyroid in tiny amounts. With replacement thyroid hormone, it's delivered via the digestive system in large dollops, along with a variety of excipients. In some people, the digestive system isn't happy about this, which is why so many of us are diagnosed with IBS for example, soon after starting thyroid hormone replacement.

Modern medicine is only just beginning to realise how significant the gut is to every aspect of health.

Until there is a way to supplement T4 without passing through the digestive system, there will always be problems. Really pleased to see that transdermal absorption might one day be available! This could be the breakthrough we all need, although if it proves possible, it will no doubt be many years before it actually comes to market. healthunlocked.com/thyroidu...

[Litatamon]

Just want to add something for those reading along (Whiterose not denying your possible allergy to lebothyroxine, just adding information)-

Synthroid levothyroxine 50s are dye-free. I would have bet my life that I could not take levothyroxine (no thyroid). I had horrendous side effects for an extended time. But I now believe it was additives, not levothyroxine itself. I am on 275 mcg (@ 5.5 x 50) and feel reasonably well.

Whiterose- you mention your homeopath, are you taking something else for thyroid issues?

[RedApple in reply to Litatamon]

'Synthroid levothyroxine 50s are dye-free.'

Litatamon, All UK brands and doses of levothyroxine are dye free. They are all 'little white tablets' (excpet of course the liquid levothyroxines, which are not tablets, not white, but are dye free )

[Litatamon in reply to RedApple]

Oh you lucky little......🤩

[Litatamon in reply to Litatamon]

We don't even have a lactose-free.🙄

Tirosint is listed in Canada, but no one can seem to produce it. They don't even know what you are taking about.

Thank you for that information Red Apple. Totally jealous.

[helvella in reply to Litatamon]

What about:

APO-LEVOTHYROXINE ( levothyroxine sodium tablets)

Levothyroxine Sodium Tablets

pdf.hres.ca/dpd_pm/00069435...

In the bizarrely chosen dosages 100 mcg and 300 mcg!

Though, ironically, they are coloured.

[Litatamon in reply to helvella]

Well I am getting close to 300 mcg. 🤩

[Litatamon in reply to helvella]

What are your thoughts on the ingredients helvella?

Thank you - I have pushed and all I get told is Canada has Eltroxin as the generic & Synthroid. Both with lactose. Eltroxin made my joints ache, felt awful.

Another thread showed we now have an alternate liothyronine. Again I have been told just Pfizer's Cytomel.

Thanks again for all your work.

Ingredients of app levothyroxine

[helvella in reply to Litatamon]

I think most of us would prefer no colouring agents but the other ingredients are pretty widely used. And they do not have lactose, mannitol or acacia - the three most often suspected ingredients.

Really is a case of trying it and seeing...

[Whiterose15 in reply to Litatamon]

Recommended by my homeopath is one daily drop of Nascent Iodine, a smidgen of Celtic Salt under the tongue and NAC Complex.

[humanbean]

I was put on inhalers, for breathlessness.

I just wanted to point out that breathlessness may be caused by low iron and/or ferritin.

Low B12 can be a cause as well.

In order for the body to make use of B12 it needs good levels of folate too.

[Whiterose15 in reply to humanbean]

Thanks for the reminder humanbean. The last test I had some time ago, my iron was quite high, but you may be right there, as I was recently drawn back to Spatone. I will see, first if this helps if not increase my B12. Otherwise I won't know which one . Incidentally any supplements I take are 20/30 mins apart, for the same reason. I read it takes that time to get into our blood streams.

[RedApple in reply to Whiterose15]

Whiterose15 'was recently drawn back to Spatone. I will see, first if this helps if not increase my B12. Otherwise I won't know which one .'

If you are in a position to do your own testing, the anaemia test through MonitorMyHealth is worthwhile monitormyhealth.org.uk/anae...