I am 52 - was fit and well 5 ft 2inch and 7 stone 12 for 30 years...
then..started suffering chest pain on Oct 2012.... went to GP who suggested it was anxiety attack as I am a) a woman and b) a woman of menopausal age......
I don't have anxiety attacks... but I am a woman after all.....................................
By way of background, yes I am a woman, I am also a TV Producer......
After several calls to the surgery over a few months being told to breathe , it was a panic attack....... I had a catastrophic heart attack and cardiac arrest on Christmas Eve 2012, was saved by my boyfriend doing CPR, was stented (1) and made a great recovery.
Nothing in family but I was a smoker....but only one blocked artery.
Went away to recover in the sunshine with my boyf in Feb -
Routine March bloods show TSH around 5 - and by early April I am feeling dreadful - GP suggests that as I have made a spectacular recovery its no wonder I am having a slide and to watch my diet maybe....chortle....after all I am a woman.... and how was my peri menapause going?
...I had then gained 6 pounds in 2 weeks having been the same weight for over 30 years and feeling dreadful - legs like lead and weak.... not helped by flooding each month due to blood thinning drugs that no one saw fit to mention might happen......
But after all - (all together now)
Felt even worse and then my cardiac rehab nurse suggested more blood tests as I was really taking a backwards slide.... The result was TSH 75..... GP slammed me on 50 micro of lev. and said ' well we were keeping an eye on it weren't we'......... I asked to see a specialist my Mother had seen Prof B at London Clinic - I am now being SO proactive.....
Prof B seems to take a real 360 degree view and gave me a great deal of time....he did ultra sound and told me my thyroid was shot - destroyed, I had Hashimotos and my antibodies were over 5k and 3k - so he is slowly raising my dose monthly (have to be careful of my heart) - also pt me on Vit D and Iron and Folic acid (my stools are black...ewwww)
I see no positive changes 5 weeks in - I am now on 75 micro and my cardiologist , who is working with Prof B suggested I would be on 150 before I felt better -
I put a call into the Prof yesterday as I am suffering the worst period cramp I have EVER had and bad flooding.... I also had to take yesterday off work which I just don't do.... and spent the morning in bed (don't do that either- I am a Duracell bunny)
He suggested that if I didn't improve I may well be diagnosed as depressed.
Really?
I am angry - yes...
ill...yes....
frightened...yes...
depressed? No. And I will not have a possible bad reaction to meds be called depression....I am not being packaged away as a hormonal depressed woman.
Ah but oops - my bad.... I forgot... I am a woman after all.....
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Southlondon
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I love Proff B and re really does know his stuff but not surprised by his comment on depression. I was due to have some lymphatic drainage just recently and my practitioner insisted I call him to check it was ok to go ahead. Proff B scoffed that it wouldn't do me any harm but wouldn't do any good and it was a load of old rubbish. He then told me that he would like a massage froma nice young lady because he is 'naughty'.....
I did find him to be a good listener and interested in how the femail mind works (perhaps after his recent comment i should reframe that so I would reiterate your concerns about being angry, scared, ill but NOT depressed. If he doesn't start treating you with more respect, move on. Have you tried acupuncture? Could be a nice add on to your current regime. There's a brilliant place in Waterloo. Really hope you feel better soon. Jane x
Hi Jane - thanks for that - I like him too - but there is a slightly uncomfortable / unwelcome element of flirting that I have noticed- as in, do we really want to know that he is 'naughty'?.............
I concur. I've moved to Gloucestershire and am going to check out SB at warickshire Nuffield. She looks good and some people on the forum have seen her. Perhaps a little less old school?
If it isn't that we're women of a certain age then we are just hypochondriacs and making it up! But why? That is the question they refuse to address. Why would a previously active, full of life person want to be ill? Why would a professional woman want to have to leave the job she loves? Why would someone who has loads of things they'd love to do spend the day in bed - I really, really could not get up today yet I had so much I wanted to do!
Why wouldn't we want to be well, earning, living life to full?
Ah, yes, it must be because we've reached that certain age.....
So pleased you survived the heart attack but so wish, like all of us, you'd been listened to. I guess we've reached that certain age when were expendable.....
sometimes recently I have really felt that Sandi and it is remarkable that in 2013 that is still the case....if anyone knows a woman who is clever, can empathise and is a qualified endio -in London - I will pay x
hi Maybe you could suggest a programme of research for the TV company you work for. You would have a queue a mile long. We need to go back to the local Thyroid boards where the Endos really cared rather than the computer says no syndrome of today, because statistics no best not the individual being treated knowing their body.
...your post was a wonderful mixture of serious events balanced with humour. You have not mentioned what your FT3 blood result was. Surprised your Prof hasn't mentioned it or your Cardiac man. There is a book on Amazon where you can take a peep inside - lots of technical detail - it's a medical book - but think you will get the message as to how important T3 is for the heart and of course every other cell as well. "The Thyroid and Heart Failure " sounds a bit dramatic - sorry - written by Italian medics ! x
Do hope you continue to improve and find the solutions that will take you back to feeling on top of the world.....
......I have often read that people with anti-bodies have a bigger problem converting T4 into the ACTIVE T3. For the Prof to say you would need to be on 150mcg T4 before you felt better is a shot in the dark in my humble non-medical opinion ! For the reason I have just mentioned. It may be worth asking about introducing a small amount of T3 as it is low in the range as is the T4. Of course it may improve in time. The TSH needs to come right down to 1 or below so you can begin to feel better.
Reducing the TSH may well reduce your anti-bodies. Have just read 'Hope for Hashimotos 'by Dr Alexander Haskell. It is an excellent read and a great help in understanding the illness and the problem of anti-bodies. You may find others not agreeing with his protocol but it is worth consideration.
Have you explored other aspects that may help/aid conversion of T4 into T3 ? It's important to have B12 Folate Iron Ferritin and VitD tested.....good levels required and not just inside the range. Lots of good information on this forum under tags and of course on the main Thyroid UK website.
Do hope you feel better soon - it's a bumpy road - and take good care......
I'm sure I've said elsewhere - this "thing" that doctors have for dismissing people is done, I suspect, to cover their own inadequacies, as in "oh dear, I don't know what's wrong with you".
If I take my animal to the vet, they will never blame the animal or tell me it's of a "certain age". They will do their vest to find out what is actually wrong.
Dogs are routinely put on T3 for hypothyroidism! When my friend's dog was put on T3, I got an appointment with Dr Skinner soon afterwards and have been on armour thyroid ever since! The dog went away into a corner and moped whenever she needed a dose of T3 and I realised that T3 was what i lacked, because i felt the same!!
Have to reply to this as my cat was losing weight so he went to the vet yesterday - been diagnosed with a heart murmur and hyperthyroid..... wtf? Bless him taking all my symptoms..... ^-^
Hi southlondon your blog has made me smile Thank you there is something that I've noticed and its no matter how bad our bodies are letting us down our humour is usually the last to go!! But then- we mostly are women after all!!
Everyone else is giving good advise on other things in your blog so i thought id comment on your bleeding!
I too had bad flooding etc for years before I was diagnosed hypo to extent of having a hysterectomy at 41. I had hypo symptoms for several years before diagnosis and feel if I had been diagnosed and treated with the optimal dose of thyroxine earlier I may not have needed the hysterectomy. I have no regrets as I was liberated from the constant bleeding and all thats associated with it and saved a fortune on sanitary protection!
So my thoughts are....perhaps when your condition has stabilised and with the correct medication and optimal dose, your flooding may improve
(It may not tho as it could just be menopausal!!)
Also with all the flooding and blood loss I'd suggest blood tests for iron/folates and ferritin as they could be low.
Menstrual problems are quite common with thyroid disease.
Thanks Wendy - yes laughter is VERY important....just been crying with laughter at Graham Norton and the interpretative dance from Azerbaijan on Eurovision
I am on Iron and folic supplements now too but the iron doesn't seem to agree with me....think more red wine may be called for!
You should really be taking your iron four hours away from any thyroid hormone and also with a large dose of Vit C (you make have to increase it gradually from 1000 mg to 5000 mg so you don't get the runs). Vit C aids with absorption of iron and helps with bowel movement.
On the flooding, I have just gone through five months of it and have now changed from Erfa to T3 and it has finally stopped after two weeks on T3. I am also feeling a bit better. So, sometimes it's because your body is telling you that something is not right. I am also perimenopausal.
That's interesting Wendy, I had the same thing. Very severe flooding and a hysterectomy at 41. I never really felt better afterwards and my GP helpfully said I probably never would at my age! Eventually went back still complaing of extreme fatigue,a different GP wanted to put me on HRT, to give me " a bit of a boost and make me feel better", when I queried if I needed it she said she could tell I was oestrogen deficient by looking at me. It was only when I refused to take HRT until my hormone levels had been checked that a blood test was done and thyroid was included. My TSH was over 50. I hadn't made the connection between the heavy bleeding and thyroid before but of course it is all endocrine related and makes perfect sense.
I was on the waiting list for a total hysterectomy for heavy bleeding and 'depression' and managed to avoid it when a bright spark in the gynaecology clinic gave me a thyroid test!
Every time that I hear about heavy periods l remember back to when l was twelve/ thirteen a year after l started my periods. They were so heavy that l used to wear two pads and would still leak badly. The pains were also excrutiating and l would rock back and forward on the chair crying, and that used to happen every month. In fact it was like that until they stopped when l was about 52. Thank goodness there is no more of that now. In fact l quite enjoy being older. I was never taken to the doctor about my periods but did take painkillers every month.
Bit off topic but if it rings a bell with someone it might help....
I went through a phase in my mid twenties of having awful, excruciating period pains and was dismissed by various Drs for two years ( I moved around a lot then) as being 'over sensitive' and told to take even more pain killers. I was taking huge amounts of codeine every month to get through it.
I finally went to a Dr in the midlands who ordered a laparoscopy for the following day and.....surprise surprise...I had raging pelvic inflammatory disease which had affected my fallopian tubes as it had been allowed to run riot.
Luckily, I went on to have my lovely daughter at the age of 30 ( after panicking and being told that my chances of getting pregnant might be slim).
Thank god for that Dr being on the ball and listening to ME saying it wasn't normal.
Ring any bells with DR's attitudes in general? Unfortunately, especially male Dr's and their...'well, you are a woman' spiel.....grrrrrr.
Roflmho red wine and Graham Norton (what a delicious combination Eurovision !!!! Umm did feel Bonnie deserved more points
I'm on ferrous fumarate 210mg 3xdaily. They seem to suit me. Gluten sensitive so have a few tummy issues but they seem ok
Enjoy the rest of your weekend x
Thank you southlonder for giving me a good laugh and so sorry that you have suffered in this way. In 2000 I went to my gp because I was getting very breathless doing very little and had given up smoking so thought that was strange. GP sent me for ECG and told me I was fine, thankfully my sister was a nurse and due to family history (GP didn't ask about it) said that if I had angina it would not show up unless I was having an attack at the time of test. Went back to GP with husband and he asked for me to see a heart specialist and surprise it was not refused. I had 2 blockages so have been very lucky as I have not had any problems and take no medication as I think it would cause me to have the heart attack.
You will not feel better with a TSH of 13, it needs to be below 4 and probably below 2 before you will feel better but there are many dr's who say you are fine once it gets to 5. You don't say if you have had a reverse T3 test, you should have one. You didn't say if you take your iron well away from your thyroxine, very important not to mix them. Dr B D P (who is himself hypothyroid but practices in Yorkshire privately only now) would recommend 3,000 mg vit c a day take in 3 separate doses. Folic acid, I know very little about and should research as I like to know.
Very important is that you avoid gluten with hashi's, it is our enemy - just removing gluten from your diet will help you to feel slightly better now and amazingly so once you are properly dosed. If you can avoid dairy as well that would be a huge move forward for you. Hashi's is very controllable and in some cases curable if you follow the 'rules'.
I have problems at the moment and will post them later, I have no idea what is going on and that actually is worse than the disease itself for me :(.
Thank you for your comments and signposts -I have changed gp's within the practice but was really focusing on me rather than him. I am sure he won't make that mistake again......x
Hi Southlondon - I was diagnosed 3 months ago with Hashi's. I've been gluten-free for 4 weeks now and I definitely know my new diet is helping me. In this time my thyroid has become less swollen and it no longer hurts. I've been told that gluten is toxic for inflamed thyroids. I thought going gluten-free would be a nightmare, but with help from a friend who is a coeliac, it's not too bad.
So sorry to read of your dreadful health saga. In addition to the posts above I would like to add a few things from my own:
At about 40, at the same time as I discovered that I had hashi I also started going through the menopause with severe headaches for days on end, heavy bleeding, night sweats etc. and in turns out that the hashi can cause the menopause if not adequately treated. Have you been tested for this?
With regard to the low vit D and B12 make sure you have high enough doses of these, particularly the Vit D. Even healthy people in the UK need 2000 IU a day in the winter months according to my private Dr!
Hashi has definitely affected my energy levels and I have to pace my activity or end up crashing like you described, unable to get out of bed. So give yourself time to recover, it can take years, I'm afraid, until the level of medication is correct. Also, as the thyroid is gradually destroyed you gradually need more medication and often there is a time lag between these two things.
I understand that hashi sufferers seem to be unable to take all the normal vits and minerals from food as healthy people do and it may be a good idea to take a good supplement (higher doses than the over the counter remedies) you can order these online or go to a really good health food shop.
Many of us do not appear to be able to tolerate much alcohol!!!
Maybe you could produce a film one day to educate the world and health professionals about this invisible condition? Sadly, my friends and family just do not understand. With your sense of humour it would be brilliant!!!
Hi Southlondon, have you seen a gyny? I had similar flooding as you described, a Dr. examined me and found fibroids, removed in a day procedure. Probem not competely resolved but vastly improved. All the best.
P.S. After all you are a woman, wait to you get to 75, it becomes 1) After all you are a woman and 2) After all you are getting an old woman. I am just waiting to hear (3 After all you are a daft old woman.
Oh and yes - he is less than useless - I need to stop reading Dr Google as it seems my childlessness might be associated with this too...... no one has thought (and by no one I do mean me) to have tested my thyroids before now.
Need a warm private woman gyni in London - any recommendations?
So many accounts of doctors indifferently playing with people's lives it is unbelievable. Lymphatic drainage is used in mainstream medicine, it is not 'a load of old rubbish' and that prof B was extremely unprofessional if not pretty vulgar in what he said. I am glad you made an amazing recovery and hope you will continue on that road.
Hi Belowrm - it wasn't me it was Janiebell that had that experience with the Prof x
Hi Southlondon, what a time of it you've had! So pleased you are making a recovery. The hypo/heart connection is very strong ncbi.nlm.nih.gov/pubmed/182...
It's the 'woman's problems' get out that gets my goat. I felt impotent to do anything for years until I found this brilliant site. Now i and two other women have a petition with the Scottish Parliament and they are listening. youtube.com/watch?v=CVXvYrJ...
Hi, my sister had Livial when going through the menopause, she didn't have flooding so I'm not sure how well it would work for that but she felt brilliant on it, no more PMS and felt very stable mood wise. I do know they don't normally give it to people who are still having periods as it can make them irregular but it's worth a try. I don't know if it's an option for you but cerazette (mini pill) worked brilliantly for my severe period pain and flooding, it completely stopped my periods which had been mega heavy and painful since I first started at twelve. I only came off it due to mood problems when starting menopause.
Thank you - did your sister go on this after others? It's just my flushes stopped on femiston 1/10 and I would hate for them to return on Livial (on top of everything else!)
I am still staring at the packets.... we go on holiday to Turkey on 13th and I just dont want my period then - thinking I may just take all the white pills from femiston 1/10 I have left until coming back and then expect a heavy one and then start on the new meds....
Yes she was put on Premarin first but felt really bad mood wise so then tried HRT patches which worked well but her skin became too sensitive to them so she was swapped onto Livial. It worked well for her, no more hot flushes or moods but she had already finished her periods for a couple of years before taking it so I'm not sure what would happen in your case. I think I would do what you said since your going on holiday and wait until after to give it a try. In theory it increases oestrogen, progesterone and testosterone so should help with Flushes.
I think your brilliant. I have just been diagnosed as hypo at the age of 46, my gp is a lady and lovely. I does worry be though, the whole process seems rather complicated to stabilize it.
I'm on 100 m and am feeling better, have noticed the flooding though.
My GP says my bloods are " normal range " now. I go back for blood tests in 3 months. I do feel a bit, right that's you, go away. !!!
Thank you - and so glad you are feeling better - I am still on 75 but having blood tests on 29th May and seeing the endio on 1 June and expect to go up to 100 then..x.
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so I would reiterate your concerns about being angry, scared, ill but NOT depressed. If he doesn't start treating you with more respect, move on. Have you tried acupuncture? Could be a nice add on to your current regime. There's a brilliant place in Waterloo. Really hope you feel better soon. Jane x
I am not wonder woman yet unfortunately !!
Am I a lost cause?
Now I am confused - thought I was still under-dosed but now I have my test results.
I am at a loss
