9 Years of Hypo - Part 3 - getting treatment

[lizanne]

Hi All

I am now picking up the story April 2006 at the point my GP referred me to an Endo after months of severe hypo symptoms.

April 2006 - I got referred to an endo at local hospital and brought along details on my long list of symptoms, showed him my eyes so he could see the bare skin where all my eyebrows had fallen out, showed him a huge tangle of hair that had come out in my hairbrush that morning (not over weeks - just that morning) and showed him some private blood tests I had done for TSH, T4 and T3, explained about my severe joint pain, fatigue, extreme coldness. cold hands/feet etc.

He was very dismissive, said he gets people in all the time telling him they are hypo or have addisons, but agreed it was interesting that the T4 and T3 levels were falling and TSH rising although still in range.

He arranged for a thyroid stress test - I cant remember the proper name for this - and the results came back normal range (wish they told me the numbers..). He also arranged for an adrenal stress test. I queried me having this while I was still breast feeding my baby. So I asked to speak to him and he said I didn't really need it done, there was nothing wrong with me and - I quote: 'You should just get on with your life and stop looking for problems that are not there'. I hung up and cried, I was feeling so ill, exhausted and with a new baby and all the signs of hypo and he didn't believe me. What a patronising way to speak to anyone!

The one big regret I have is that I wish I had the adrenal test done. Subsequently I have realised my symptoms were a real mix of hypo and adrenal problems and my adrenals and DHEA levels are still woefully low. That may have got his attention more if he had seen those results.

Back to the GP, she said her hands were tied but was very sympathetic. It was obvious I had to figure out my own way forward.

June 2006 - I contacted Thyroid UK who were fantastic. I got a list of private doctors and booked in to see Dr M. He ran very comprehensive urine and blood tests. T4 and T3 low, hypo diagnosed. I was put on Armour starting at 1/4 grain. I eventually got up to 3 1/2 grains. I was also on a wide range of vitamins and supplements. I am sure they helped but the private tests, appointments, private prescriptions and supplements cost a fortune. I also realised that my adrenals were not recovering, I still felt exhausted and strung out (tired but wired) and unable to cope with daily stresses.

Feb 2009 - So after almost 3 years of treatment I went to see Dr P for a second opinion. He agreed adrenals still flat, I started on nutri adrenal and then I started taking HC. I was on this for a year, I didn't feel it made any difference and I wasn't keen on staying on it anyway. I was buying it over the internet and buying Armour over the internet too and I wasn't comfortable with this either.

Jan 2012 - So by this stage I am on Armour for about 6 years and doing ok but functioning rather than living. I also found Armour wasn't working as well; I think they changed their formula. So I was fed up with not getting any better and paying a fortune for it all which was another stress. So back to Dr M who agreed to write to my GP and advise her what T3 and T4 I should be on as I was stable on armour as opposed to having big hypo/hyper swings. My GP agreed and I was put on 125mg of T4 and 40 mg of T3. It was great relief to be within the NHS system, on a 'recognised' treatment and not to have to keep paying out so much money for private treatment.

October 2012 - so my switch from Armour to T3 and T4 was going fine but I started looking at ways of getting better, getting back to normal, getting rid of the tiredness - doctors always told me when you are on the right treatment your symptoms resolve. So I still don't have eyebrows or have hair on my head recover, I still feel tired, still get over stressed and over tired (and have made considerable lifestyle changes to help). So what else to try? I came across Paul Robinsons CT3M protocol. I bought his book and a lot of the points he raised range true with me.

Feb 2013 - so I had adrenal saliva test to check adrenals (still very low - better than they were 5 years ago but not recovered). so I am now trialling the CT3M method and hoping that may work

April 2013- no improvement as yet, still trying but I think it is still early days with CT3M and I am approaching this with some hope!

I would really love to hear from anyone who did get their eyebrows, hair, energy back and to know how they did it.

Final comment on all this - one of my biggest breakthroughs was this fantastic forum, supportive people with thyroid problems, based in the UK, familiar with the NHS system and what treatments are available here and best of all - more knowledgeable than most of the doctors I have spoken too! I am so thankful that I can share ideas, ask questions and get good advice from people who know better than me!

Lizanne

[PR4NOW]

Lizanne, how much HC were you taking and what kind of dosing pattern were you doing? Did you ever do a complete female hormone panel to check the adrenal cascade? Have you ever checked your estrogen/progesterone balance? How about aldosterone? 'Tired but wired' can also be too much T4, or T4 toxicity, my sister experienced this. I hope CT3M works for you. Quite often when our hypothyroid has been untreated for so long it seems we end up balancing a lot of things to get back to normal. I would like to suggest that you add this to the case studies on TUK. PR

[PR4NOW]

Lizanne, sorry, just found your April 1 post with levels. Adrenals side is low, I will try and find a cascade chart for you. PR

[Issy]

I got my eyebrows and most of my energy back. How much Armour were you taking?

[lizanne in reply to Issy]

I was up to 3.5 grains of armour, I am now on 125mg of T4 and 40 mcg of T3 as well as Vit D3, Evening primrose oil, b12 etc.

How much armour are you on?

Did your eyebrows completely fall out and for how long before they came back? My doctor thinks that because mine have been gone for 8-9 years they wont come back now despite treatment. It really bothers me.....

[ThyroidThora]

Oh dear, what a rotten experience you are going through.

I'm not sure how I can advise you because I was only diagnosed with Thyroid cancer on the 4th February, this year. I had the right lobe of my Thyroid removed on the 28th February and my endo surgeon was hopeful that the left side of my Thyroid would take up the slack. I feel so ill with hypo symptoms that I sent him an email about a follow up appointment I had had with a registrar at the oncology outpatients. The registrar wasn't supportive when I saw him and one email later my endo surgeon organised a follow up appointment with him a few days later. That happened yesterday afternoon and he checked my blood tests results, saw that I was ill and showing hypo symptoms and put me on 75mcg of Levothyroxine. I am hopeful that this will work.

Have you had your Vitamin B12 tested? It is only a blood test and can be done at your GP's surgery. Vitamin B12 deficiency causes fatigue and tinglings in hands and feet.

[lizanne in reply to ThyroidThora]

Hi Thora

Thanks for your support, I am very sorry to hear about your experiences. I am glad your endo is on the case. Keep in regular touch with him and ask him to retest you once you have been on the Levo for a few weeks. Hopefully it will work for you but good to keep getting it checked in case you need to up the dose.

I have had Vit b12 tested, it has never been low but I do take a supplement to ensure It doesn't dip!

Best wishes

Lizanne

[Heloise]

Here is a checklist you might find interesting for adrenal support. There may be some corrections to your diet and supplements you could try if you haven't done so yet.

drrind.com/therapies/Adrena...

[lizanne in reply to Heloise]

Thanks Heloise. I have been doing a few things for adrenal support including lifestyle changes and taking DHEA and Pregnenolone as well as Vit C etc. I sometimes wonder If I was maybe born with weak adrenals as I have had incidences with allergies, asthma chest infections etc all along but in the past 10 or so years is when allergies got worse and past 9 years when hypo thyroid symptoms started.

So I do try and follow on the adrenal guidelines, ensuring I get rest, minimising stress, taking supplements, but it hasn't had the impact I wanted re getting me back to 'normal'. I keep wondering if I am missing something but frankly given everything I have tried there hasn't been a stone left unturned!

[Heloise in reply to lizanne]

I tried DHEA and it gave me a terrific headache. I'll work back up to it later. But someone advised against pregnenolone...experts do disagree at times. I am not sure what the reasons were but decided I wouldn't try it.

Did you read that the adrenals will steal from progesterone in order to make cortisol? That may have been in a different article but I do feel a bit better when using progesterone cream and a few others have recommended some types. There could be a domino effect with hormones so I agree with you. I know I've always been a night owl and mornings are difficult starting at a young age which is a sign of weak adrenals. I hope you figure things out.

[lizanne in reply to Heloise]

Hi that's interesting re progesterone, I didn't know that, hadn't come across that before.

Where did you get the progesterone cream from? Is it prescribed?

In what way do you feel better when you take it?

I'm interested to know more!

[Heloise in reply to lizanne]

drrind.com/therapies/thyroi...

In the left column, look at estrogen dominance.

I use Source Naturals Natural Progesterone Cream but others have recommended some who live in the UK, I don't.

I just have a general positive feeling, i.e. not as much pain, more balanced.

[lizanne in reply to Heloise]

Thanks for the info and the dr rind link.

I guess when I started out with symptoms I was straight forward hypo. But as that went untreated then the adrenal strains started so I am now a very confused mix of both!! I don't think I can get progesterone cream without a prescription and my doctor has said the dhea and pregnenolone are the pre cursors to other hormones so if take that it should fix testosterone and oestrogen and progesterone balances..I live in hope..!!