Has anyone used Thyroid Plus to investigate their Thyroid problems? It seems a costly Thyroid Screen but it seems to cover everything.

[Suzy61Taylor]

I feel as if I'm getting nowhere fast with my Doctor. My blood results for TSH were 10.7 three weeks ago and yesterday the results were 15.9. Thyroxine made me feel so much worse, so I've stopped it temporarily until I have more facts. My running/training is at an all time low and I've got so much planned for this season. I don't want to sound too critical of my Doctor but I'm wondering if he should be looking more closely at T3 and screening for anti-bodies. Advice please!

[shaws Administrator]

What dose of levo were you on? It is obviously far too low if your TSH has gone up another 5. You will feel ill if you are not on optimum medication. Has your GP raised your med?. You have to give it a chance. It can take about six weeks to build up in your system. As hypo affects every organ in your body I personally don't think it's a good idea to stop before exhausting

all other avenues.

I know how bad you can feel initially and we don't expect to feel worse when on medication. You can ask to be referred to an Endocrinologist.

Your GP should test your Free T3 and antibodies, B12, Vit D, iron, ferritin and folate.

[Suzy61Taylor in reply to shaws]

So Shaws - is it normal to feel worse before feeling better on Levl? After a few days of taking 25 mcgs Levo I found it made me so weak I could hardly raise my arms in the shower to wash my hair. I have applied for the Total Thyroid test and on the outcome shall go from there. Can there be any other reason for TSH levels to rise? Do you think it might all go back to normal if I take things a little more quietly?

[shaws Administrator in reply to Suzy61Taylor]

Once you are on an optimum level of levo, you may find yourself feeling very well but on the low dose you are on is too low for your needs. Your GP should have started you on 50mcg (unless you are very frail with heart problems) and raise it about every six weeks by 25mcg till you get to a dose that makes you feel well.

Some people do not feel any better on levo, I was one and was glad to go onto another thyroid hormone, but had to go private. I am well now. Hopefully, you will feel better soon.

[Natalie_Edinburgh in reply to Suzy61Taylor]

yes you may feel you are worse to begin with as your body is run down and will struggle to function at full speed straight away. For example your adrenals might be underfunctioning due to low thyroid levels and you need your adrenals to be functioning to properly utilise the thyroxine well.

[Rhiannon5]

Yes! I've just ordered the test for myself. My GP agreed to do T3 testing but the lab decided not to do it!

I have Hashimoto's and am trying everything I can to avoid thyroxine at the moment. Currently I am on a homeopathic remedy as well as huge changes to diet and lifestyle and in the last couple of days I've seen some subtle improvements.

You can get some great information from an American doctor on Facebook called Suzy Cohen.

I've done loads of research as I'm also training to be a nutritionist and naturopath xx

[Suzy61Taylor in reply to Rhiannon5]

Hello Rhiannon5. Twice my blood has been sent off with the GP requesting T3 testing but as you stated the lab thought otherwise. By the time the GP read the blood results and then contacted the lab my blood was no longer viable. As a ultra marathon runner and Ironman Triathlete good nutrition is paramount for my energy levels. I feel so 'out of the ordinary' at present and I have gone from being a very successful athlete to power walking at most. I am so reluctant to stay on Levo until I have a fuller picture. How long did it take until you got a Hashimoto's diagnosis? I have a son who is Crohns and a sister who has Rheumatoid Arthritis. Does this increase my chances of an autoimmune thyroid problem? I too have made significant changes to my diet. Nothing processed and Gluten Free. I have always taken pride in my nutrition so I'm at a loss as to what has gone wrong. My GP is of the opinion that my metabolic rate and high levels of stress (from physical exercise) could be an underlying cause. As I have Comrades to train for in SA in June and other high profile events this year I'm desperate to get this sorted. Any info will be gratefully received !

[Hidden]

Do you mean the private test through GD? Yes several times. It is because rt3 has to be done in US. IUt is a very good service. In fact next week for the first time i am having just the regular one as my rt3 is the only one always in range

[Suzy61Taylor in reply to Hidden]

Thank you Bluedaffodil. Is my TSH level particularly high (15.9)? Will it get worse? My T4 was only just out of the range 10.4. I'm hoping to wake up tomorrow, leap out of bed and go for one of my coastal path training runs and come back home re-energised

[humanbean in reply to Suzy61Taylor]

That is a very high TSH as far as I'm concerned, although I know it can go up over 100 for some people before treatment. But on the other side of the coin are people who are bedridden with a TSH of 3. So comparisons don't really help. It is well over the artificial limit of TSH = 10 that doctors say indicates overt hypothyroidism so at least that is one problem you ought not to have. Your doctor should accept without question that you do need treatment and you do indeed have hypothyroidism.

Most people feel well with their TSH being about 0.2 - 1.0 but there are always exceptions.

If you have only recently started on levothyroxine and your doctor put you on 25mcgs of levo per day that is the first thing he did wrong. I'm guessing from your posts that you are reasonably young and fit. A starting dose of 25mcgs was too low - you would probably have done better to have started on 50mcgs per day. You should have blood tests every 4 - 6 weeks and your dose of levo should be raised regularly until you feel well. Sadly though, most doctors pay no attention to symptoms and just dose by the TSH which has a range of about 0.5 - 5 (depends on the lab). Once you are in range they say you are fine, now go away and stop bothering me.

Another problem is that, once you start taking levo, a struggling thyroid may just give up the ghost altogether. So, your own thyroid production may have dropped, and the 25mcgs levo is insufficient to make up the difference. It is difficult to be precise but my understanding is that a replacement dose of levo is usually around 100 - 200mcgs of levo per day - but gender, age, body weight and activity levels do make a difference.

Clearly you need more levo. There is no question of that. And from now on you need to ask for copies of your blood test results every single time you have tests. The results must include the reference ranges as well - without them the results are just random numbers. Keep records religiously. It would also help if you got copies of historical tests you have had too.

If there ever comes a time when you feel really, really well, then shell out and pay for a full thyroid panel to be done privately at that time. Then at least you know what figures you want to aim for in future if things go wrong again.

You also need to research vitamins and minerals, and need to ask your doctor for tests of these. Without good levels of the right minerals and vitamins your body can't make use of the thryoid hormones you take or produce. But I think this is enough to be going on with.

[Suzy61Taylor in reply to humanbean]

Hello - not young (61) but very fit as I have always competed in sport from school days. I love nothing better than to travel overseas to try different events, mostly ultra running or events over several days. I have to sort myself out in the quickest time possible as Comrades is looming ever closer. I do appreciate all the comments given

[Hidden in reply to Suzy61Taylor]

Sorry but think that this may have to take a back seat for a while. My personal experience, where I tried to cycle through rubbish health and pretending there was nothing wrong with me, led to a bit of a melt down that saw me spending 18 hours in bed every day.

I believe that by ignoring symptoms it actually took longer for my body to recover.

[Helenback]

Does anyone have a link to this company, sorry I cant help you Suzy, I am in a permanent fog and am wondering now if I should do this test.

[humanbean]

If you are referring to this test :

gdx.net/uk/product/140

I had it done, and it highlighted a problem I had with high reverse T3. I thought it was worth doing the test just to know that. Having gone on T3 only for a while I will repeat the test at some point when funds permit. I don't regret having it done, despite the cost.

[poppppy in reply to humanbean]

woud I need reverse t3 test as now taking t3 only . I have had all the other tests via my wonderful hospitals luckily . thankyou .

[HarryE]

My results from them have come this morning. TG antibodies at 1007, with a range of 0-40.

Came back a lot quicker than the stated turnround time too!

[humanbean]

This graph (from a web archive site) might help you to understand TSH distribution in healthy people. Print it out and show it to your doctor if your doctor thinks your TSH is normal when in fact it is extremely unhealthy! :

web.archive.org/web/2005020...

[Rhiannon5]

Suzy, with your family history of auto immune conditions it is likely that you may have antibodies present. If this is the case then thyroxine won't stop your immune system from attacking your thyroid it will just replace the lost thyroxine that your body isn't producing.

It's really important to get the bigger picture so that your treatment can be tailored to suit you individually. Your body converts T4 (thyroxine) to active T3 (triiodothyronine) however if you have high levels of reverse T3 sitting on your receptor sites on your cells then the active T3 won't be able to get past them, therefore no amount of thyroxine will help with that.

Absolutely being gluten free and no processed foods is paramount, so it's brilliant that you are doing that!

There is so much that you can do nutritionally and with relevant supplements, however if it is autoimmune there is the issue of reducing the attacks by your immune system.

Also have a look at this link which will be relevant only if you have the antibodies present

thyroidbook.com/blog/hashim...

It really made sense to me when I found this as I was taking herbal remedies with lots of the herbs that could make my symptoms worse and I didn't know at the time.

I'm now seeing a Homeopath and taking a homeopathic constitutional remedy (tailored to me) and Thyroidinum. It's early days yet as I only started it last week but it does seem to be making a subtle difference particularly with my morning pain in my fingers and I feel brighter

If you want to private message me I will be happy to speak with you, or if you're nearby we can meet up, maybe I can point you in the right direction with some practitioners who could offer further advice. I've learned so much about it from my studies and research and I have a practitioner account with many companies who have a wealth of information available, I may have some other information that can help you.

A hair mineral test is also useful, I can talk to you further about that if you wish. My hair mineral test was insightful and identified adrenal burnout, due to long term chronic stress and hypothyroidism. It's so useful to get the bigger picture!

Look forward to speaking to you soon x

[Suzy61Taylor in reply to Rhiannon5]

Hi Rhiannon. Sorry not to have replied sooner and I'm so grateful for the extra information and links you have given me. I'm having my bloods done later today (privately), so I'm really hoping to get a clear picture as to what is happening to me.

Is it possible to have an autoimmune problem with the thyroid later on in life (I'm 61).

One strange thing I have noticed and perhaps you may be able to shed light on this. When I come back in from a run/power walk my temperature drops to 34.5. After an hour or so it goes back up to 35/36 Last year I was pulled out of the water due to hypothermia and my rectal temp was 33. Since then I have abandoned cold water swimming as I cannot maintain a safe body temp.

Also, everything I read about Hypothyroidism is that most people are tired most of the time and want to sleep. I don't seem to have that luxury of sleeping well, in fact quite the opposite. I can be up three or four times a night and therefore I find myself sleeping during the day for little 'cat naps' and can spend 2/3 hours asleep very early evening. Is sleep disruption another symptom? To me this sounds more like Hyperthyroidism. I don't have a weight problem either. But maybe that's because of my very healthy diet.

This thyroid diagnosis is mind stretching in the extreme and quite an emotional 'thing' to come to terms with and I do not want to except a label. Who said 'its not the event - its the meaning you attach to it'

I really look forward to any further advice you can offer - best regards

[Rhiannon5 in reply to Suzy61Taylor]

Hi Suzy, I'm glad you're getting your bloods done, it will give you a lot more information to work with to ensure that any treatment plan that you decide upon is tailored to you.

Yes it is possible to be diagnosed with an autoimmune disease at a later stage in life. I've heard of people being diagnosed with Coeliac disease in their sixties when they originally thought that their aches and pains were due to arthritis. After a few months gluten free, they found that their pains went.

There are so many symptoms of both hyper and hypo thyroidism and some people don't get them all or even they just get the opposite of what is deemed 'norm' for the symptoms. I know another lady with Hashimotos who hasn't got the usual symptoms at all!

Your sleep pattern can be due to adrenal fatigue and you could be waking up due to release of cortisol during the night. There is a good book on adrenal fatigue called 'Adrenal Fatigue: The 21st Century Stress Syndrome' by James L Wilson. It may be work having a look at.

Also the fluctuating temperatures can be thyroid related.

I agree with you about the label, it doesn't sit well with me either, however I think that with the right frame of mind, we can learn to drop the label and just be who we are.

Look forward to speaking with you again x

[Marz in reply to Suzy61Taylor]

Sometimes auto-immune issues can be simmering away for years due to gut dysbiosis or LGS - Leaky Gut Syndrome. My Hashimotos was diagnosed at 59 in 2005 - here in Crete. The Crohns was diagnosed when I was 27 when I had ileo-caecal TB.

How did your bloodtests go - that you mentioned above ?

Try to focus on your health rather than targets further ahead - take it a day at a time.

When I started on T4 in 2005 - I too felt wretched after a few weeks and stopped taking it on the advice of the Endo. I restarted on a lower dose and took it from there. Probably due to LOW Iron B12 etc. Have learnt so much from the people on this forum so do try to follow advice that suits you. You will still be the same person without all those accolades in sport - but if you continue at such a high level you may well suffer with your adrenals - if not already - shakiness etc. Have you followed the advice with some home testing on Stop the thyroid Madness Website - for adrenals....it may just give you some idea where to go next. Dr P does not treat people with T4 until their adrenals are performing adequately.

There is so much to learn - and this is a good place to be

[Rhiannon5]

sarahwilson.com.au/tag/hash...

Suzy, this is a pretty good read too x

[Natalie_Edinburgh]

Keep taking the T4. It may make you feel worse before you feel better as it will take a while for your body to adjust. Then later if your thyroid completely fails you may find it might be worth adding in 5-10ug of T3 for every 100ug of T4.