Hello everyone - firstly, thank you for hosting this forum. I was newly diagnosed in November with a TSH of over 100 and FT4 less than 2 - and prescribed 125mg of Thyroxine daily. I am feeling hugely better and am due my first blood test next week.
Out of curiosity - does anybody know how long it would have taken me to get that ill? My GP said maybe a few weeks but as I have massive stamina and high pain tolerance (I am a cyclist and runner - though have had to shelve that for a few months) is this not likely to have been something that has been brewing for years? I have never felt really “right” since having twins 10 years ago? I have read around a lot and there seems no view on this. Also have been reading about “flare ups” in symptoms that can arise - does anybody know any more about the causes? I have read about stress - is this why bloods need to be monitored to adjust doses?
Thank you so much for reading my post, I am learning a lot from this forum.
Catherine
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CTPY
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Anything from a few months onwards. The thyroxine in your blood has a half-life of seven days and as that falls the pituitary responds with more TSH to kick your thyroid into more action. So, I would say at least a month, but it can be very gradual, it varies.
I was I'll for three years and very I'll for one year prior to diagnosis of severely underactive thyroid the >75
With all symptoms under the sun from severe swelling, weight gain, nails, puffy face, dark eye circles, looking like walking dead, during that time, and fobbed off numerous times until random consultant had a light bulb moment to run thyroid bloods.
One of my private endo said, that very high TSH takes months/year to develop. Which would tally with my own personal experience.
I reckon my symptoms were over at least an 18 month period, with one symptom at a time then disappearing.
Then wham they hit me all at once.
Dizzy spells, hair loss, Extremely cold all the time, tired, brain fog, major bags under my eyes and unstable weight, depression, extreme muscle pain and major neck stiffness.
I saw a counsellor at first as thought I was falling into a deep depression.
I saw a Physio for my neck stiffness as thought I had hurt it at the gym, despite treatment and not going to the gym for 8 weeks it didn’t help.
It wasn’t until I went for acupuncture to see if this helped my neck, they advised to get my thyroid checked.
I ended up paying privately for full bloods.
I was low on every vitamin and I’m been diagnosed with Hashimoto’s.
This forum has been my saviour, and I have learned more on this forum than my consultant (privately paid) gave me. In fact I was advising what to do next.
I was back and forth to him feeling rubbish, then once my results improved it was sorry can’t help you now as you have improved.
I’m on no medication as since going gluten free my TSH is within ‘normal’ range as I been told I can’t have medication.
I’m still feeling awful and I’ve been seeing a nutritionist, I had a stool sample and this has come back that I have major bacteria infections and has entered my blood stream which is attacking my body and my immune system.
I went to my GP to request antibiotics which I have been given but I got the impression she was not pleased that I had tried to sort myself out without involving her.
She also dismissed my stool sample, and told me I should go back to my consultant.
However, I told her that my consultant said there was nothing further he could do as I’m in range. She has now decided to do a blood test regarding my stool sample and I requested a thyroid test.
If you have thyroid antibodies present - even with a 'normal' TSH you should be prescribed.
If you email Dionne at tukadmin@thyroiduk.org and request a copy of Dr Toft's Pulse online article in which he states that if antibodies are present we should be prescribed. The Office wont open until after the New Year.
But I wonder as I saw a Endocrinologist (that was on the list provide) and as he didn’t prescribe me anything I doubt that my GP will now go over his head?
I’m having a thyroid test again via GP, I’m hoping this will come up still showing something.
What I don’t understand is nearly everyone that has Hashimoto’s has been prescribed something.
Thank you all for your information - it’s very interesting to hear your experiences. I must say that my experience sounds much like yours Peanut. I was ill with aches pains depression periodic weight gain and various trips to osteopaths and physios with weird pains. In one way I am glad to have an answer but sad that I have this condition thank you for answering.
Sound so similar to my experience CTPY . I felt like that for approx 10 years which was when I had my first child. Never felt good again after that but I just didn't connect the dots & realise the symptoms were related until a diagnosis this year.
That is interesting Kipsy - I remember looking at ridges appearing on my nails a year or two after the twins were born and my hairdresser wondering what was going on with my hair as it was dry and brittle - I was permanently knackered and down and hated going out and socializing which was unlike me. The only way I gave myself a lift was going running and cycling which was fine. This year my son was critically ill with asthma and wham - all the symptoms hit me at once until I actually thought I was going to collapse. Sure enough TSH >100 and was so ill. I’m on 125 thyroxine at the moment and have improved massively but am only swimming as endo said no high impact exercise until thyroid recovers. He was genuinely surprised I had not been to the doctors until my complete burn out.
So glad to hear you finally got diagnosed. My symptoms such as aching joints, hair falling out, feeling low, more anxious than normal, no energy or zest for life (totally get the socialising bit you mentioned) all niggled away in the background for years and years and my local health food shop did very well out me as I was constantly trying to solve each individual issue. Nothing ever worked for long! I never bothered going to the GP apart from the hair loss (doctor pulled at my hair, didn’t succeed in getting what he deemed enough out in his hand and declared my hair to be normal 😂😂😂) and complete lack of libido (shame there’s no female viagra!). I
I finally saw a GP back in March this year as I hadn’t been without a cold or infection for three months solid. She ran a TSH and T4 test. T4 was just in range but she then did an antibodies test which were over 1000. Bingo! Got a diagnosis and thyroxine...still working in perfecting my dose and eternally grateful to the good people on here for teaching me so very much.
Just sad that I wasted 10 years while my children were growing up and sad too for all those people out there still suffering and not knowing what’s wrong with them. I gave a copy of Dr Tofts new counterblast article to a GP friend a couple of days ago- I think she will read it and hopefully it will influence her thinking and might help some of her patients.
Probably years, but it is impossible to say and also depends on your definition of ill/sick. Flares can be triggered by stress (mental and physical) and food sensitivities like gluten and dairy.
Thank you for your answers. Kipsy - your experience sounds pretty identical to mine. Strangely so - wasting years feeling depressed and alienated is how I have been feeling. My hair used to be thick and now all I can see is my scalp showing through and about 20/30 strands of hair coming out every time I wash it - just hoping that things settle down with time and try not to focus on the many negative posts out there. I have gone gluten free cut out caffeine and am taking many supplements - though I miss my cycling! Thank you for letting me know that I am not alone everyone - and not going mad with a myriad of symptoms. I’m hoping my bloods in a few weeks will show and improvement on a TSH of over 100.. and a negligible FT4. I’ll also ask for FT3 to be tested too.
I think it would have taken years for your TSH to rise so high. In other countries people are diagnosed when their TSH goes above 3+ but in the UK, for some unknown reason, they make a patient wait until the TSH reaches 10.
I had a TSH of 100 too when diagnosed but I know it took years and I finally had to diagnose myself. Of all the doctors I saw none knew any clinical symptoms, diagnosed me with 'other' problems. Even had an op to remove something in throat I didn't have at all. So you can realise how I've lost faith in any doctors with regard to any problem with my thyroid gland. I now self-medicate and am well instead of seriously unwell.
Not one of the Specialists I sought help from - No doctors recognised hypothyroidism but a First Aider did when I had to get assistance when at an airport.
Many women become hypothyroid after pregnancy and that may have been the cause of yours.
When hypothyroid our gland cannot produce sufficient hormones, T4 or T3. T4 is inactive and has to convert to T3. T3 is the only active thyroid hormones and enables our metabolism to work optimally. If hypo and we train too much/excercise too much, it depletes the T3 and we don't feel so well until we are on an optimum dose.
Blood tests have always to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours from your last dose of levo and the test and take afterwards. This helps keep the TSH at its highest as doctors are apt to adjust dose without cause and we feel ill again.
Ask also for B12, Vit D, iron, ferritin and folate. Deficiencies can also cause symptoms. Usually, if in UK, the doctors believe (are trained) to test TSH and T4 only. That doesn't always give the bigger picture, particularly if we still don't feel well and have symptoms. In that case we need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. Antibodies only if we have hashinoto's. Ask for B12, Vit D, iron, ferritin and folate. If GP or lab wont do all of the tests you can have a private one and we have two labs who do pin-prick home blood tests.
Levo should be taken first thing on an empty stomach and wait an hour before eating. Food interferes with the uptake of levothyroxine.
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