New member – needs some advice and reassurance!


I've been following the excellent threads on this forum for a while, and would really, really appreciate some support and advice. Apologies for the length of this post, but it would seem prudent to include as much information as possible to allow a knowledgeable response. I would also like to say that my GP has been very supportive and has done her level best to help me – to the point of admitting that the thyroid was not her speciality and that she would refer me to an endocronologist for better care.

I was diagnosed with hypothroidism in July 2015 last year, after complaining to my local GP of constant fatigue and that my legs felt like lead. However, I was already being treated for depression and anxiety (for at least 15 years without must success), high blood pressure and high cholesterol prior to this diagnosis. I was put on 25mcg synthetic T4 for four weeks which was then raised to 50mcg.

My results PRIOR to starting medication were as follows:

TSH: 5.47 (0.3 – 3.18)

FT4: 12.5 (13.1-21.3)

FT3: 4.3 (4.1–6.6)

I had all the associated blood tests done by my GP (including all the irons) which showed that, apart from low folate levels, everything else was actually pretty good and well in the mid-ranges. The exception was folate, which was at the lower end. Regardless, since July 2015 I have carefully supplemented with the following (I don't go mad, just a regular regime to ensure that, within reason, I am keeping everything at a sensible level):

• Floradix liquid iron with B vitamins

• Cod liver oil and coconut oil

• Slow release vitamin C capsules

• Solgar sublingual vitamin B12 tablets

• Solgar folate (not folic acid) tablets

• Ionic (liquid) comprehensive minerals (magnesium, zinc, selenium etc.)

My thyroid was tested a number of times until the end of the year, but only using the TSH range (which even I had worked out by then was somewhat dubious), so I decided to get a private test via Genova. The results were as follows:

TSH: 1.33 (0.4 – 4.00)

TT4: 86 (58 – 161)

FT4: 12.6 (11.5 – 22.7)

FT3: 5.4 (2.8 – 6.5)

RT3: 0.27 (0.14 – 0.54)

TG antibodies: <20 (<40)

TPO antibodies: <10 (<35)

I was still not feeling any better so was quite shocked to see a reasonably high T3 reading. My little knowledge at the time suggested that a high(ish) T3 should equal me feeling absolutely great! In despair, and rather stupidly, I simply stopped taking the synthetic T4 around January/February 2016 (though have always kept taking the supplements).

I noted that my Vit. D levels had not been tested, so had another private test via Genova in January. The result came back as deficient (13). I immediately started taking 10,000 IU's daily of D3+K2 supplements for three months, by which time they had risen to a healthy 150 (I still take 1000 IU's daily to help keep them there).

I also had a saliva adrenal profile test (4 times throughout the day) in March 2016. This showed a marked rise in the morning and mid-day (above ref. range), slowly dropping throughout the day until the last two readings were within the reference range. At no time did the readings drop below the reference range. I doubt they're great (and I do understand that over-active adrenal glands can cause many problems), so I am doing what I can to reduce those levels.

To cut an already long (and probably somewhat dull) story short I became fairly unwell in June of this year (I suffer from heightened anxiety and anxiety attacks after prolonged spells of stress) and was asked by my GP to go back on the synthetic T4 accordingly. After 6 weeks back on 50mcg of synthetic T4 my doctor took new bloods and the readings came back as follows:

TSH: 3.35 (0.3 – 3.18)

FT4: 17.2 (13.1 – 21.3)

FT3: 4.3 (4.1 – 6.7)

T4 was up (first time I have seen this), but T3 back down on the naughty step! Still feeling no better I was referred to an endocrinologist who I saw the other week. I have read all sorts of horror stories about less that helpful advice from such specialists so I must admit I was somewhat apprehensive. He enquired about my adrenal function (the results of which I had taken with me and left with him) and thoroughly checked my history/bloods/symptoms. He suggested that sometimes people only start to feel better when their T4 is in the upper range or near the top and suggested I should at least try 100mcg's of synthetic T4 for another 8 weeks (as it takes time to accumulate in the body). I was to come back in 10 weeks time, getting both blood and saliva (adrenal) tests done prior to this. However, he then mentioned at the end of the consultation that if this did not help that there were other alternatives, namely something called NDT or adding straight T3 to the synthetic T4. He made it clear that the NDT would need to be paid for privately.

I have done enough research to realise that this was not the norm...

Well, I tried the 100mcg. I mean, I really tried taking it, but it simply made me feel awful. After 5 days and feeling like I was crawling out of my skin I had to stop and revert back to the 50mcg's. Don't ask me why. I usually tolerate synthetic generic medication perfectly well. But not this. 50mcg's is tolerable, but APPEARS to do little for me, whilst 100mcg's is simply too much (I have also tried 75mcg's and feel somewhat in the middle of the other two). I immediately wrote to the endo., explaining my reaction and asking if I could have the next appointment bought forward to discuss the NDT option – I don't want to stop treating my thyroid, rather treat it using something that will actually make a difference to my quality of life – not make me feel worse!

The excellent advice on this forum (and others) indicate that NDT is a better solution for many (probably most) people, so a little while ago I took the decision and purchased three half-grain bottles of Nature-Thyroid from a reputable online pharmacy. I had held off trying these as I was somewhat apprehensive, and was more than happy to use the synthetic T4 if it would actually work – plus, it's free!

Well, this Monday just gone I took the plunge. I finished the 50mcg's of synthetic T4 and started using the NDT. At present I am simply taking 1 grain in the morning, no more, and will continue this for 3 weeks before upping it by half a grain. I explained this fully in my letter to the endo. He at least seemed aware there were options and would, I hope, understand my course of action. Naturally I indicated I would much rather do this under his guidance and would be quite happy to purchase any further medication in the UK via a private prescription if this made him feel more comfortable. I hope to hear back from him shortly.

If it helps, I am 53 and weigh 15 stone. I eat healthily and do at least 30 minutes of gentle exercise each day. I don't smoke, drink only occasionally and limit my intake of sugar.

Some very basic questions which I would be very grateful:

• I assume the figures shared here reflect that I most certainly do have hypothyrodism?

• Is there a good chance that using NDT sensibly, continuing to do the things I am already doing, being patient and checking my bloods regularly I could make some sort of recovery like so many others? (gawd, I do hope so)

• Is my starting dose generally safe? There are conflicting reports over the web. Obviously it is very early days so I feel no change whatsoever at present. How long should I stay on this dose? How much to raise it by and when?

• Can such readings have an impact on one's physical health and cognitive (mental) well-being? Depression, anxiety etc.? I have read that this is the case. Anyone out there start to loose their constant feelings of anxiety after a time on NDT?

• As much as I (along with anyone else in the same boat) would like to feel better right now I understand this is not an overnight fix – far from it. Would it be unrealistic to see some SOME sort of improvement in a month, or is it different strokes for different folks?

• Is it a case of both the T3 and T4 building up in the bloodstream, or just the T3? What are generally agreed to be optimal ranges of T3 and T4?

• Is there anything I could do that I am not doing? (I filter my drinking water and use a natural fluoride-free toothpaste).

Blimey, sorry. If you've reached this far I'll send you a medal – plus a couple of matchsticks to stick under your eyelids.

Thanks to all.

10 Replies

  • Welcome to the Forum Myford100.

    The difficulty that many of us have is not knowing when we became hypothyroid, it's easy to ignore random symptoms until such time as there's clearly something going on. Anxiety can be due to being untreated hypothyroidism as can both high cholesterol and depression, not that a GP or Endo will tell you that. It follows that if you've been untreated for a long time then equally it will take a long time to recover.

    Surprised that your dose was increased from 50 to 100, that's really not sensible. Ideally you'd give Thyroxine a good trial, after all it works for 85% of thyroid patients and you're entitled to free NHS prescriptions.

    I don't understand why your FT3 results varied so much, hopefully members can throw some light on that.

  • Thanks for your response Cinnamon Girl.

    I showed the endo. the T3 'spike' for that very reason and he commented that it was not unusual to see the odd anomaly, especially if the thyroid has been under active for a length of time and has only just started to be stimulated again. He mentioned he had seen some strange readings in his time though after a prolonged period of the right treatment they 'settled down'. That's about as good an answer as I can give.

    So I assume if the gland is recovering correctly you would most likely see a rise in T4 first followed by a corresponding (slower) rise in T3. Is that a reasonable expectation?

    With regards to the NDT, I think I would prefer to follow this course rather than synthetic T4, even if it is free. There seems to be enough well measured anecdotal evidence that points to its efacy with far less side effects. It would seem to give the body more or less what the body would make itself which has got to be more beneficial to help it heal more naturally.

    So all that said, is my starting dose OK?

    Thanks so much.

  • Hi, Joolsey, sorry, I'm confused. Have you got two names? I thought he OP was Myford100.

    But, I'm curious... What, exactly, does your endo think is stimulating your thyroid gland? I feel I've missed an episode! lol

  • A long post i scanned ,did I miss B12? The cause of my lead legs .Get to around 900-1000 do not rely on "normal" ,not necessarily optimal for you.

  • Hi

    Thanks for the reply. B12 around 2000, so should be enough...

  • I have read that some pills for depression have a negative effect on Levo/T4 - and therefore your results.

    What other meds are you taking in addition yo the T4 ?

  • Hi

    Thanks for your reply. Yes, I take an SSRI, probably like many people on this forum. I would be happy not to, but I need to start feeling a bit stronger before I contemplate ditching them. Although I can imagine most drugs interact with each other to some degree I've read many accounts where people have recovered well enough on NDT (which I am now using as opposed to synthetic T4) even though they were still on T4 only. Having said that, they all - to a man - ditched their anti-depressants after feeing much better for a prolonged period of time.

    Guess it's early days for me yet...

  • Was not suggesting you ditch anything. Merely that AD's can skew thyroid results. Also they contain fluoride which also compromises the thyroid.

    You may find Kelly Brogan's website helpful and her book - A Mind of Your Own.

  • Thanks Marz.

    Apologies, I wasn't suggesting that you were! Though I really don't think they do much and would dearly love to ditch them anyway!

    I guess that's why it's important to dose by symptoms, rather than test results. I will check out the site.

    Many thanks.

  • Another thought.......even though you don't appear to have Hashimoto's.......have you tried gluten free diet?

    I found enormous drop in "background" anxiety when I went gluten free (but I do have Hashimoto's)

    Also lots of us find magnesium beneficial, especially if have known Vit D issues.

    Good vitamin B complex too

    Lastly do you take selenium? Supposed to improve conversion and uptake of T4 (less important I guess now you are on NDT)

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