thyroid misery

CathyMoran

I went to Crumlin when I was 3 until I got to old for that place. I had Graves when I was 3 and got diagnosed with Type 1 diabetes when I was 12 and went hypothyroid later but I also have other medical conditions.

alphatango

I took my daughter back to the gp today and in all fairness he was most helpful. He took bloods for tsh, ft4, ft3 and antibodies, i think he did a test for adrenal as well but not 100% sure about that. When we get the results he will know then what sort of a referral she needs and refer her accordingly. I was happy leaving and I feel we have made a step in the right direction. Thank you all for your thoughts and suggestions, it has been very helpful.

New Home

Well, the adrenal glands, the thyroid and the pituitary gland all seem to affect one another, so it's great to hear that your worries weren't dismissed by your GP. When anyone's health, but especially a child's health is involved, safe, or even paranoid, is always better than sorry!!

I hope they'll get to the bottom of whatever it is that's making your daughter feel so unwell, and I do hope she gets better soon.

alphatango

New Home wrote: »

Well, the adrenal glands, the thyroid and the pituitary gland all seem to affect one another, so it's great to hear that your worries weren't dismissed by your GP. When anyone's health, but especially a child's health is involved, safe, or even paranoid, is always better than sorry!!

I hope they'll get to the bottom of whatever it is that's making your daughter feel so unwell, and I do hope she gets better soon.

Thank's for that New Home, i definitely don't want to have any regrets down the road so i hope she will get sorted out now and if it turns out to be nothing much thats great. I will let you know how she get's on.
The local lab will not do some of these tests so he is sending them to Biomnis lab in Dublin just to let people know who are having trouble getting these tests done.

Sammy74

Hi there,

I've read through loads of the forum. It is very useful - thanks to everyone for posting. I'm hoping someone can provide some advice as I'm at the end of my tether. I have all of the symptoms of a thyroid problem but my test results aren't enough to get treated.

The background is I had post infection IBS for 2-3 years beginning about 4 years ago. It was a horrible experience and I went through the mill with every consultant sending me for loads of expensive tests before I found a consultant who made the diagnosis - He predicted it would clear up and thankfully it has pretty much cleared up as of 12 months ago.

Unfortunately despite constant diarrhea I gained weight during this period and have continued to gain weight subsequently. This is despite working out 6 times per week and a very tight diet (overseen by a personal trainer - who suggested a hypothyroid issue) I am also cold all of the time (hands, nose etc), am quite down and suffer from brain fog.

As I had hypo symptoms my GP did some tests but I do not know the results. One was low so she retested and told me it was fine. Subsequently my GP showed absolutely no understanding but reluctantly agreed to send me to an endo in Cork. I'm not sure hat she said to him in the letter but he did no tests. He said it was all in my head...it was so upsetting.

My husband read about a GP in south dublin who took this stuff seriously so I got an appointment with him. He is expensive and ordered loads of tests and I had me second appointment yesterday. The test results were inconclusive and
he refused to treat me as hypo.
TSH 1.06 (0.27 - 4.20)
Free T3 4.8 (3.1 - 6.8)
Free T4 15 (12.0 - 22.0)

The only thing that came back as being unusual was DHEA and Cortisol both of which are low. He prescribed DHEA but now wants me to do some really expensive gluten tests. I am a bit suspicious of these as I previously did FODMAP and had endoscopies for gluten...all of which showed I had no problems.

I now have no idea what to do next. I really feel that it is a thyroid / hormonal issue but am at a loss as to how to move forward

Has anyone had a similar experience?
Can anyone recommend a dr/consultant who will take me seriously?

Amazingfun

I wish I could help you with this but your free t3 does look pretty good and the t4 too seems fine. I would encourage you to post your info here on the FTPO groups on Facebook. There are some seriously talented people on there who can help with labs and thousands of people who have various other issues as it appears you might. Here is the link: https://www.facebook.com/groups/FTPOThyroid/?fref=nf

Amazingfun

Ps: Getting "expensive tests" for gluten seems cracked. Could you not just take gluten out of your diet for a month , then add it back for a few days and see if you have any reactions? best of luck btw way, seems like you've been on an awful journey so far. Also, Gena Nolin of "Thyroid Sexy" went for years and years of hell with specialists and always told her numbers were "normal". She was finally diagnosed hypo via ultrasound. Just food for thought.

Sammy74

@ Amazing fun

Thank you so much for your responses. Just to hear from someone with some empathy who actually understands is such a help. Thanks also for the facebook link I'll get on that this morning.

That is interesting about Gena Nolin... tbh I was hoping the GP would allow me to take some thyroid meds and just see if it helped me feel better. If it didn't then I'd be able to cross it off the list... Also considering self-medicating...

Your very good to offer the advice on going off gluten for a month - I might try that. The gluten test were going to be over 600€....

Can anyone recommend a GP or consultant who is really good anywhere in Ireland? Based in Cork but happy to travel...

The_Conductor

Sammy74 wrote: »

Can anyone recommend a GP or consultant who is really good anywhere in Ireland? Based in Cork but happy to travel...

I've gone to Donal O'Shea in Loughlinstown for thyroid issues. I found him really good. It would be a bit ridiculous to trek all the way up from Cork though- its quite a journey? There must be good endocrine specialists in the University Hospital there?

cltt97

@Sammy:

Have you got results for TPO antibodies? You could be perfectly in normal range but have the autoimmune-condition. Also with the low adrenal hormones I would ask for an ACTH stim test - this tests if your adrenal glands works properly. You should read up on adrenal fatigue, there is a lot you can do yourself if that's a problem.
Unfortunately my endo is retiring, he was an absolute gem, but I have heard good things about Dr Margaret Griffin, from what I hear she's tuned into the whole cortisol issue.

Sammy74

p.s. Does anyone know where you can get a thyroid ultrasound in Ireland?

New Home

I'm sure any of the hospitals would do them, but you'll need a referral to get it done.

Sammy74

@cltt97

the only anti body test was Anti-Thyroperoxidase (anti-TPO?) which was 0.1 (0.0 - 5.61)

My cortisol seems low
Sample 1 awakening 6.8 (5.56-22.2)
Sample 2 4.00 (2.45 - 8.12)
Sample 3 2.4 (1.54 - 5.56)
Sample 4 0.9 (1.17 - 3.18)


Do you need a GP referral for Dr Margaret Griffin my GP is totally unsympathetic? Happy to travel as I haven't found someone good in Cork...

Wyldwood

Sammy74, I'm also in Cork and had an ultrasound done in the Bons last year. I can't remember the cost but think it was about €180.

Unfortunately, most doctors, be they GPs or consultants, treat by numbers, just look at the blood results. Your results look good on paper so you're up against a wall trying to get medication.

I've seen 2 GPs and 2 endocrinologists in Cork and neither of the endos was able to help, other than running tests, but my problem is complex. Both endos were very approachable and easy to talk to. I can pass on the names to you if you wish. I think the low cortisol could be a big problem for you so maybe try to get treatment for that first. Adrenals problems have to be treated before thyroid can be healed.

Best of luck

This is another useful website to chat with other thyroid sufferers https://healthunlocked.com/thyroiduk

Sammy74

Wyldwood - thanks for your response, understanding and offer of help. I think I'll try Margaret Clane next. My circumstances also seem complicated so don't think I'll get anywhere with the Cork medics...

sam34

sammy74, your posts are just on the border of what's ok here. No one can diagnose you here on this forum. You need to seek further medical advice, not advice from randomers on the Internet.

Emme

Sammy74 wrote: »

@cltt97

the only anti body test was Anti-Thyroperoxidase (anti-TPO?) which was 0.1 (0.0 - 5.61)

My cortisol seems low
Sample 1 awakening 6.8 (5.56-22.2)
Sample 2 4.00 (2.45 - 8.12)
Sample 3 2.4 (1.54 - 5.56)
Sample 4 0.9 (1.17 - 3.18)


Do you need a GP referral for Dr Margaret Griffin my GP is totally unsympathetic? Happy to travel as I haven't found someone good in Cork...

Sammy, I can't give you medical advice but I have Hashimotos and had adrenal problems last year. My GP found this through adrenal saliva testing and thyroid tests TSH, T3, T4, TRAB and reverse T3. He has a slightly unorthodox approach but it worked for me and he has a great interest in thyroid issues and helps a lot of people all over the country.

In the meantime it might be a good idea to cut out gluten, tea, coffee and all sugar and see how you feel. Also try to get to bed before 10 and get at least 8 hours sleep a night.

Sammy74

Emme,

Thanks for that feedback. I subsequently went back to my GP and have discovered that I had tests done about 6 months ago which were below the bottom of the range for both t3 and t4. Pretty annoyed to be only discovering it now...Have now got copies of these and will take to see my new endo in a couple of weeks....fingers crossed...

Amazingfun

I subsequently went back to my GP and have discovered that I had tests done about 6 months ago which were below the bottom of the range for both t3 and t4. Pretty annoyed to be only discovering it now...

Shocking really. Another incident which proves why so many of us absolutely have to be our own advocates. Best of luck with your next step

lovelystuff

Random health news, i had bloods done this week and show a highly elevated white blood cell count, which has gotten worse since October. Waiting to hear back from the Dr now,so hard not to worry!

The_Conductor

lovelystuff wrote: »

Random health news, i had bloods done this week and show a highly elevated white blood cell count, which has gotten worse since October. Waiting to hear back from the Dr now,so hard not to worry!

Any infection at all- will give you an elevated white cell count. Don't jump to conclusions. The most common causes of an elevated white cell count are- prolonged exposure to an allergen, a bacterial infection - or quite commonly- an inflamatory condition (arthritis, colitis, Crohns etc), or indeed a physical trauma (think broken bone etc.).

Bring your concerns to your GP- but don't automatically assume that an elevated leukocyte count is a problem in its own right- its a symptom- normally on a list of symptoms- which have an underlying cause.

lovelystuff

The_Conductor wrote: »

Any infection at all- will give you an elevated white cell count. Don't jump to conclusions. The most common causes of an elevated white cell count are- prolonged exposure to an allergen, a bacterial infection - or quite commonly- an inflamatory condition (arthritis, colitis, Crohns etc), or indeed a physical trauma (think broken bone etc.).

Bring your concerns to your GP- but don't automatically assume that an elevated leukocyte count is a problem in its own right- its a symptom- normally on a list of symptoms- which have an underlying cause.

Thanks conductor, much appreciated. My arthritis inflammatory marker came back negative which is great, and my stomach is grand. I'll hopefully get to talk to him tomorrow, only symptoms are fatigue and I look a bit rough (pale etc). I know when it was elevated last time I was told it was probably viral and to just wait it out! At least my thyroid is behaving itself for once though. Thanks

cltt97

@Sammy74

I think all endos more or less need a referral, but I have a vague memory that someone told me they had written a letter to her first outlining all their issues and she rang them then...
Your cortisol levels do look very much on the low side. The test I suggested ACTH tests for adrenal insufficiency - I think that's what I would do next if I was you!

LimerickBishop

Diagnosed NOV '09 TSH of 75. Put on 75mcg of Eltroxin. 100KG
Blood Test MAR '10 TSH of 17. Kept on 75mcg of Eltroxin. 95KG
Blood Test JUL '10 TSH of 15. Put on 100mcg of Eltroxin. 93KG
Blood Test SEP '10 TSH of 12. Kept on 100mcg of Eltroxin. 92KG
Blood Test NOV '10 TSH of 10. Put on 125mcg of Eltroxin. 91KG
Blood Test JAN '11 TSH of 5. Kept on 125mcg of Eltroxin. 90KG
Blood Test APR '11 TSH of 4.18. Kept on 125mcg of Eltroxin. 89KG
Blood Test JUL '11 TSH of 2.40. Kept on 125mcg of Eltroxin. 84KG
Blood Test SEP '11 TSH of 6.04. Kept on 125mcg of Eltroxin. 85KG
Blood Test NOV '11 TSH of 3.00. Kept on 125mcg of Eltroxin. 85KG
Blood Test MAR '12 TSH of 11.80. Put on M-F 125mcg /S-S 150 mcg of Eltroxin. 86KG
Blood Test JUN '12 TSH of 5.10. Kept on M-F 125mcg /S-S 150 mcg of Eltroxin. 89KG
Blood Test NOV '12 TSH of 6.00. Kept on M-Th 125mcg /F-S 150 mcg of Eltroxin. 86KG
Blood Test MAY '13 TSH of 1.70. Adjusted to M-W 125mcg /T-S 150 mcg of Eltroxin. 88KG
Blood Test NOV '13 TSH of 3.00. Kept on M-W 125mcg /T-S 150 mcg of Eltroxin. 95KG
Blood Test SEP '14 TSH of 4.10. Kept on M-W 125mcg /T-S 150 mcg of Eltroxin. 92KG

Free T4 came in at 16.3 pmol/L in September 2014.

I will update this record within a week with my results from yesterday's blood sample. In the past few weeks i've felt like i used to feel just prior to my diagnosis 6 years ago. I've felt stressed out, found it hard to make simple decisions, found it hard to find the right words when in conversation with someone and so on and so on.

Amazingfun

limerick Bishop have you read this?


"TSH: Why it's useless"

http://www.stopthethyroidmadness.com/tsh-why-its-useless/

Sharon1111

Hi All

Im sorry to interupt but im in trouble my current doctor is retiring and im looking for someone new. I suffer from reverse T3 with fibromyalgia chronic fatigue photo sensitivity to name a few my symptoms are kept under control with 160mg T3 and 600mg CQ10. Until I become stressed and my symptoms flare up and medication has to be increased. I recently got blood tests done and have no one to read them. Who would ye recommend for reverse T3 issues im based in the West.

Thanks guys

Wyldwood

Sharon1111, is it your GP or endo who is retiring?
Sorry I can't help as I'm not in the west but could you not get a referral to another doctor from your current medic? I know it's hard to start over with someone new, especially when you are not a run-of-the-mill case. I've been there, twice. Hopefully someone will be along to give you a recommendation.

LimerickBishop, good to see you back on the forum and sorry you're not feeling the best, hopefully it's just a blip.

On an aside, I'm back almost to square one. Slightly increased the dosage to 12.5mcg x 3 days and 25mcg on the 4th day in a repeating pattern and am really not well again now. I have lots of palps and really uncomfortable tightness in my chest, which comes and goes. Lots of pains and aches all over. Have to take a beta-blocker which makes me feel drugged. Going back to endo to demand that he tests everything possible again. After 4 and a half years of this rubbish feeling I don't think I'll ever be right again, sadly.

Just as a matter of interest does anybody suffer from a weird vibrating feeling with pounding, racing heart? Have been woken in the middle of the night by this strange sensation three or four times lately.

cltt97

Wyldwood I had a bit of a set back a while back, too. Came off all the meds and started again from scratch with tiny doses and increasing again extremely slowly. I found taking iron and Vitamin D seems to help with the weird pseudo hypo symptoms and I space my meds out over the day, so I never take the whole lot at the same time. I'm on ERFA plus T3. Works ok for me now.

Wyldwood

cltt97, sorry to hear you've hit a bump in the road, this illness is a complete pain. Hope you feel better soon.

I am also taking Vit D even though a recent blood test showed my levels as adequate and GP said to cut back on supplement. Don't take iron as I don't want to risk the digestive disturbance. However, my ferritin is bottom of range so probably could do with a boost. What iron do you take and is it gentle on the digestive system?

cltt97

Yes, I know the iron is a bit of a digestive challenge! I take spatone, the liquid sachets. I take them on and off, I feel I can handle them about 3 days in a row and then I stop again as I get constipated otherwise. I was thinking the other day I must try and mix it with orange juice (Vit C increases absorption) and drink it over the day so I'm not getting a full dose in one go, but I haven't tried that one yet.
But it's vital to get the iron up, I remember reading a scientific publication a few years back about the impact of low iron and that it can lead to hyper symptoms in hypo people