PCOS, M.E and hypothyroidism,low iron and high ferritin. Gosh I’m that confused today that I’m confused with what I’m confused over!

If anyone could spare the time to have a little read of my blog and questions, advise and also look over some blood results I received today I would really appreciate it. I will try not to waffle. Thanks. I have so many questions but such little energy and such poor health but will write/speak (I have software not a PA!) what I can.

If it helps first I will provide a little bit of background…….

I am severley affected with ill health and currently housebound and capable of very little and very dependent on others. This has been the case since Oct 2010 when my GP signed me off work long term sick (I had during 2010 had shorter periods of sickness off work). For the last 5 years I have not been feeling myself but it was in 2010 when I started to become really ill. I was eventually diagnosed with M.E by the NHS in September 2011 after numerous blood tests came back as ‘normal’ (I now use that term very loosely) including limited thyroid tests and yet I was deteriorating fast as well as gaining an awful lot of weight despite extremely healthy eating. I also have PCOS and because of previous problems with my weight which started when I was a child (despite always leading a healthy and active lifestyle) I think the doctors were quick to point the finger at PCOS combined with stress as reasons for weight gain. I disagreed as I had previously after many years of not being able to control my weight in any way shape or form, went on to lose 15stone; 12 stone of which was in 2 years. I didn’t change anything diet wise other than I was placed on metformin for a few months (I’m not diabetic) which kick started the weight loss. I maintained this weight loss for 10 years until 2008. This is when I felt my body started to unbalance intself. I used to be an extremely active, full of life, confident individual with a good career and always doing for others. Then in 2008 I had a very traumatic year, literally from beginning to end.

Fast forward to 2012 with my health deteriorating even more despite following the ‘treatment’ (another word I use very loosely) plan of pacing for managing CFS/M.E, I refuse to accept to be placed in the bin and send an e mail to join the local M.E support group. Here I discover the work of Dr Petefield and then Thyroid UK.

I eventually got to see Dr P in Dec 2012 who diagnosed me as being hypothyroid with severe adrenal fatigue. He realised how ill I have become and felt I had probably had a thyroid problem since early on and that my adrenals have been similiarly damaged. He explained he thinks I am beyond nutri thyroid or natural dessicated as he feels I have a lot of T4 but very little T3 and what T3 I do have is not being used because of adrenal deficit. (I had previously paid for Genova Diagnostics test in Sept 2012 which also showed high RT3). He suggested bringing the adrenals in line with NAX and then to start T3 with one 25mcg tablet a day.

Long story short the NAX didn’t agree with me so I built up to 11 Nutri adrenals. I didn’t feel comfortable taking 25mcg of T3 straight away as know my body is so sensitive and vulnerable at present so checked with Dr P what I should do. Decided (3 weeks ago) on half a tablet which I reduced to a quarter on two days then one day a half but my reaction was not good and I stopped. I also stopped the 11 NA 2 weeks ago as felt I was becoming toxic. Spoke with Dr P on Fri who said although he wasn’t happy about this it looks like I was going to have to go down the hydrocortisone path to help my adrenals. I mentioned the CT3 method and he said I can either try hydrocortisone cream for 2 weeks and see how I feel (with a view to moving on to tabs) or could give the CT3 method a go for 10 – 14 days then report back to him.

Now I’m confused as I’m wondering as its 2 weeks since I took NA should I repeat the ASI test just to see what state they are actually in? (I last had ASI test at end of Aug 2012) Or should I just crack on and start taking T3 using CT3 method or buy some hydrocortisone cream? I know I need to be doing something as I have been left for so long. I am slightly apprehensive about starting the T3 again and wondered if anyone had been in a similar situation?

Then to add to it my GP was meant to be testing my U&E’s (previous hyponatremia), magnesium, calcium, Vit D, iron and ferritin after along battle of asking for iron and ferritin. I had had my Vit D tested in November and it was low but have been supplementing since end of Oct and I just wondered if there would be any change but she didn’t request it and said it won’t be tested for another 3 months

My results are as follows:

calcium profile

adj calcium 2. 18 mmol/L (2.2 – 2.60)

inorganic phosphate 1.34 mmol/L (0.80 – 1.50)

calcium 2.19 mmol/L (2.20 – 2.60)

albumin 45 g/L (35 – 50)

total prot 72g/L (60 – 80)

globulin 27 g/L (19 – 35)

alk phos’ase 76 U/L (30 – 130)

ferritin 245 ug/l (13 – 150)

Iron 11.6 umol/L (13 – 32)

transferrin 2.47 g/L (2.00 – 3.60)

TIBC 56 umol/l (45 – 70)

% saturation of iron 21 %

Magnesium 0.78 mmol/L (0 .70 – 1.00)

My doctor says my iron is just below ‘normal’ (I think its not in a good way) and said she would prefer me to try to increase my iron intake through diet first. She suggested eating broccoli and plenty of green leafy vegetables. She is aware of my diet and I don't think it possible for me to consume any more vegetables than I already do. I currently take Vit D, Vit C, Magnesium, a probiotic, EFA’s and milk thistle. I was taking a cytoplan multi vitamin but stopped recently.

Am going to post a copy of my results to Dr P but would appreciate any feedback from the ‘excellent font(s) of thyroid knowledge’ on this wonderful site :-) Hopefully I have not provided useless information and have shared some useful information though given the huge amount of fogginess in my brain I would not be surprised!

To those still reading as I know I have gone on, thank you. Your time and precious energy is greatly appreciated.

A tired and wilting Pink Lily who is determined she will bloom once more :-) x

12 Replies

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  • Hi, I had low adrenals though nothing as bad as you describe

    . It took me two years on hydrocortisone to feel really well... The hc made a massive difference, much more so than thyroid meds ever did.

    Dr P. says he thinks you need hc, if you cannot take t3 then the ct3 method won't work for you.... I would try hc cream for a few days with a view to getting yourself some hc tablets. Repeating the adrenals test would be a waste, there is little doubt that they are not right.....

    Dr Peatfield has years of experience, his methods are irritatingly slow, but there are many supporters who will testify to his methods. Hc. Cream, now.... The supermarkets sell it and will still be open.

    G xx

  • I would take Galathea's advice.

    As you have had long term ill-health which has been undiagnosed, it will take time to recover - it is better to gradually improve and it also enables your strength to build up.

  • I realise you are nervous of T3 so have included a link which you may find helpful. This is an excerpt (Cytomel is T3 in the USA) It is on the right-hand side:-

    Third, the leaflet on Cytomel pharmacies give patients when they fill their prescriptions states, "POSSIBLE SIDE EFFECTS: NO COMMON SIDE EFFECTS HAVE BEEN REPORTED with proper use of this medication." This information is accurate—when plain, full-strength, one-time-per-day doses of T3 are used properly, there are no adverse effects. The only adverse effects occur when a patient takes a dosage that for her is excessive. With Cytomel, if overstimulation occurs, it can be stopped with one or two small doses of propranolol. Or the patient can simply reduce her dosage of Cytomel the next time she takes it. I want to emphasize, however, that when our protocol is used properly, there is no overstimulation to be avoided by using timed-release T3. The protocol has safeguards against adverse effects.

    And finally, why do I specify that the typical patient use one full dose of non-timed-release Cytomel for life? Because extensive testing has shown that this is safe, effective, and most economical—when used within the context of our entire protocol.

  • Hi Thyroid seem to be"in care" but have you thought about a referral to an endo? They look and test for all the wider issues around the thyroid. They would especially advice on ferritin etc. If you ask to see an endo make sure they are very good I do know a lot of endo`s prefer to try to get the thyroid right and then look at Adrenals. cortisone is such a powerful drug and not always suitable, it is totally contra indicated for me. Regarding thyroid, you do not say or print your TSH, T4 and Free T3 tests with ranges before or during treatment. Vit d takes at least 3 months to make a difference. Your corrected calcium is low so you are right to take D as it also usually pushes the calcium up. As you say U`s and Es are vital, mainly for the Potassium a very important electrolyte.Your magnesium is on the low side but remember it is a small range, also an electrolyte. Have you tried food rich in Mg. instead of supplements? Also if taking too much Mg ( not saying you are ) then it can push your Potassium up too high These,+ sodium and calcium are the most important minerals. all being electrolytes. , As I have, lots of problems my best doctors have told to take minute amounts ( as you are now doing ) and take perhaps every other day reduced dose and take about a month to reach the prescribed dose.Of course, this does not apply to cardiac and antibiotics

    I hope this gives you some ideas. Above all you will take a long time for the thyroid to be right but persevere and you will get there.

    Jackie

  • I am not comfortable with seeing an over-range ferritin, low-to-middling other iron measures, and the doctor seeming simply to want to shovel more iron in.

    Over-range ferritin should be considered at least as a marker for something else. Whilst Wiki is not perfect, it does have what appears to me to be a not-too-bad intro to ferritin here:

    en.wikipedia.org/wiki/Serum...

    Specifically the part with sub-head Elevated

    Rod

  • Yes, Rod must be right, surely low iron and serum ferritin as high as this means it would be wise to check for inflammation.

  • Thats excactly how I felt when I was first diagnosed with ME/CFS back in 1996, I had to give up my career. Then as the years went on I started to feel better. In 2002(I think) I was diag with an underactive Thyroid and 5 years later with Hypertension/high blood cholesterol, but still managed to keep down a part time job. However at the end of 2008 I had to give that up, as I was feeling rotten again. Anyway, from 2009 to 2011 I picked up again, but last year, was awful, having usually managed my health conditions, its becoming increasingly hard to feel anything like normal.

    I went to see my ME/CFS Specialist in December, he,s great, very helpfull, and I have finally after all this time been referred to an Endo, appointment 21st March, so I,ll see what he has to say. My CFS Specialist has said if im not happy with the Endo, to go back to him - and I will certainly do this, as I am feed up of being this tired. Like you, I was an outgoing, positive person, but I find Im getting more depressed because of the way I feel. Looking at all your bloods, I can honestly say, that I don,t think I have ever had bloods done to that extent, even when I have requested my GP to a full blood check, I only ever get the results for my Hypertension/liperdemia.

    Like you too, im determined to get back to prior 2012, and will not be fobbed off. Good luck to you, and lets hope we both start feeling our usual (for us anyway) selves before long. Best Wishes, Kath. P.S This is a great site for info on Thyroid.

  • what are your thyroid levels? If you have PCOS does that mean you have high estrogen? As estrogen increases thyroxine binding globulin causing a high TT4 low FT4 and high TSH (if you have a struggling thyroid). I believe adrenal hormones have the opposite effect to estrogen. Lower TBG therefore lower total T4, increase FT4, decrease TSH. so perhaps adrenal hormones might help counteract the effects of estrogen. I don't know if there is a way to lower estrogen? Thought I believe progesterone can help balance the effects of high estrogen. Cortisol levels would also be useful to know.

  • the high ferritin is also very suspicious - unusual, especially with low iron. Probably worth looking into what this can indicate

  • ncbi.nlm.nih.gov/pmc/articl...

    high ferritin and low iron Indicates inflammation. Have you been tested for c reactive protein

  • Pinklily - please dont accept the ME/CFS label - this happened to my husband - had many of the same symptoms as you - went to the NHS ME clinic and got full diagnosis - was told his thyroid was 'normal' - to cut a very long story short and after a long battle I got his GP to refer him to an endo for trial of T3 - within 2 days he was feeling the best he had felt for years - he went from levo 125mg a day straight to 20mg T3 twice a day. He has just had his meds increased to 20mg 3 times a day. I cant express too strongly how much this medication has changed his life. He can now walk, think clearly and many other symptoms have gone - he says he has got his life back. I know T3 does not suit everyone but for many its a life changing drug.

    good luck

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