RE: side effects of Tranexamic acid? and daughters update

[Guest guest]

I take tranexamic acid, and I cant say I have noticed any side effects

whatsoever from them, unless they contribute to Reverse T3 ??

[Guest guest]

Hi Jan,

This is just awful regarding your daughter.What stands out for me is her FT4 level at 8!!!! How can they say that result is normal? I am astonished at the reference range being (7-14) In other labs it is usually something like (10-22).

This is why there is absolutely no point in even having reference ranges when the medical fraternity themselves do not adhere to them.Toft states our free thyroxine should be at the upper end of the ref range,perhaps even exceeding it.Your daughter's is at the bottom.

Her ferritin at 33 is too low.Fact.It needs to be an optimal 70-90.You have to challenge these idiots.I know its hard but I think you should complain about your daughter's care and ask why the Genetics Consultant refuses to answer your questions.

Sorry,I can't advise about the heavy period issue.I have the same problem!

Regards Peary

> An update on my daughter: She is 15 her tsh was 2.03 (.5-5.50 her free t4 was 8 (7-14) we went to various other hospitals in the search for someone whoe would take those results seriously-but it failed. one year later we were referred to a genetics consultant who specialises in endocrynology. ( deletions in X chromosome can lead to auto immune issues) she tested her antibodies-she is positive. few months on at another visit, i requested test results-again. was told that her iron was 'normal'. I asked "which part?, ferritin, hb, saturation?) from that point on the consultant would not speak to me. I asked for reference ranges, he would not answer. I managed to get out of him that her ferritin is 33 ( I dont know the range) I requested the blood results again, he said that he would post them to me with his summary, he didnt of course. The summary states that he told me that ferritin of 33 would not cause tiredness(!!!!! )> > I am totally at my wits end I dont know where I stand as far as a child with special needs and consent is concerned. All I am doing at the moment is giving her a multi vitamin with iron.> > She is due to be discharged into adult services soon, she will have a thyroid test twice a year, as she has thyroid anti-bodies,and I was told that my gp can treat thyroid disease easily (no they cant).> > Any advice gratefully received.> > Jan>

[Guest guest]

it fools me into thinking that my period has finished after a week. I stop

taking the pills, then it comes back with a vengence! then the hypo feelings,

dont think its worth it, the upside is that when I take them I can leave the

house ( I cant usually for a few days )

>

> I take tranexamic acid, and I cant say I have noticed any side effects

whatsoever from them, unless they contribute to Reverse T3 ??

>

[Guest guest]

Thanks Peary Its just been one thing after another. We asked for a second

opinion, because I disagreed with the results and went down to Harrogate.

Despite me asking 3 times if her previous blood results would be there- they

wernt, so basically the new consultant took a detailed ( I took a massive list

with me) history and told me that he would be in touch. He called me and said

that he agreed with the previous consultant that her results were normal. we

went back a few months later, they had given us a registrar who actually said

that " he new nothing about thyroids " and told the nurse " she needs to see

endocrynology " I asked why he was saying that, she said " oh , it means

hormones " i replied that I knew what It meant, that is who have come to see!

Think my relationship with the new guy is bad already, I will have to write and

ask for the results. I am so sick of the way we are treated, the receptionists

at my GPs blank or are curt to me now because I asked for a copy of my results

and they downright refused to give my husband his. The gp called him to say all

was normal- thats ok then.

>

>

> Hi Jan,

>

> This is just awful regarding your daughter.What stands out for me is her

> FT4 level at 8!!!! How can they say that result is normal? I am

> astonished at the reference range being (7-14) In other labs it is

> usually something like (10-22).

>

> This is why there is absolutely no point in even having reference ranges

> when the medical fraternity themselves do not adhere to them.Toft states

> our free thyroxine should be at the upper end of the ref range,perhaps

> even exceeding it.Your daughter's is at the bottom.

>

> Her ferritin at 33 is too low.Fact.It needs to be an optimal 70-90.You

> have to challenge these idiots.I know its hard but I think you should

> >

>

[Guest guest]

Dear Janine,

I just wanted to write to let you know that you are not alone.

I too have a daughter (13) with special needs and obvious endocrine problems,

who it is clear that the NHS have closed their doors on. I have been receiving

very similar reactions from consultants down to secretaries. I have been refused

a second opinion.

I have been left with no other option than to go private. The private Dr I have

seen is so concerned about my daughter, he has referred her to a private

neurologist. I do not know what the outcome is going to be, but, I do feel that

at last my daughter is going to get the help she needs. I also do not know what

the NHS's reaction will be when they see my daughter well!

If going private is a viable option for you, then it might be worth considering

before your daughter is transferred into the adult services. I can tell you that

it is a huge relief not to be banging my head against a brick wall and much of

the stress of trying to deal with medics who will not listen or even look at

their patient's obvious symptoms has evaporated.

x

>

> Thanks Peary Its just been one thing after another. We asked for a second

opinion, because I disagreed with the results and went down to Harrogate.

Despite me asking 3 times if her previous blood results would be there- they

wernt, so basically the new consultant took a detailed ( I took a massive list

with me) history and told me that he would be in touch. He called me and said

that he agreed with the previous consultant that her results were normal. we

went back a few months later, they had given us a registrar who actually said

that " he new nothing about thyroids " and told the nurse " she needs to see

endocrynology " I asked why he was saying that, she said " oh , it means

hormones " i replied that I knew what It meant, that is who have come to see!

>

> Think my relationship with the new guy is bad already, I will have to write

and ask for the results. I am so sick of the way we are treated, the

receptionists at my GPs blank or are curt to me now because I asked for a copy

of my results and they downright refused to give my husband his. The gp called

him to say all was normal- thats ok then.

[Ed]

[Guest guest]

Hi Jan,

http://en.wikipedia.org/wiki/Aminocaproic_acid

ParaAminoBenzoicAcid (PABA) may help for reasons similar to the above material.

PABA is an intermediate in the formation of Folic Acid.

Lysine may also help?

best wishes

Bob

Is your daughter low on Folate or needs a supplement of it?

>> Hi everyone,> > after many years of extremely heavy periods because of fibroids, and unable to have minor surgery to solve the problem,(wont work on the type I have) I agreed to give Tranexamic acid another try. I am not keen on theses pills as they prolong my period to about 12 days and I am not keen to take all my supplements at the same time. I felt that I would be taking too many pills. I have started to feel hypo again, sleeping a lot, brain fog ect. Could the tranexamic acid be causing this, or is it simply that that for 12 days out of 23 that I am not taking my supplements?

[Guest guest]

Hi Jan, don't allow this idiot endoprat to get away with it.

Write to him and ask him to supply you with all of your daughters blood test

results together with the reference range for each of the tests done and to

send you the promised summary. No matter what he says about her ferritin level

of only 33 not being a cause for concern and would not cause tiredness - he is

absolutely wrong and there is sufficient evidence out there to prove him wrong.

She should have a ferritin level of at least between 70 and 90 (Dr Kharrazian

states her levels should be 100 or more). The iron in a multivitamin would not

be sufficient, she needs somewhere in the region of 200mgs twice a day to start

off with together with high doses of vitamin C (4/5000 mgs) or at least to

bowel tolerance to help with the iron absorption and to stop any possible

constipation. Write in your letter of request that you want a written response

from him within 10 days and for your letter to be placed into your daughters

medical notes.

You are obviously not going to get anywhere with this endoprat,

so drop him and get your daughter referred elsewhere to an endocrinologist who

actually cares about his/her patient.

Apologies for not going into the Tranexamic discussion,

but I know little to nothing about this and will leave it to those who have

experience of using it.

Luv - Sheila

An update on my daughter: She is 15 with a learning disability and deletions in

2 of her chromosomes. It has taken me 15yrs to get a diagnosis for her. I

posted about her a year or so ago because of her fatigue and anxiety. her

consultant who deals with X chromosome problems did some thyroid tests, but

laughed at me when I requested magnesium to be tested, so it began>> her

tsh was 2.03 (.5-5.50 her free t4 was 8 (7-14) we went to various other hospitals

in the search for someone whoe would take those results seriously-but it

failed. one year later we were referred to a genetics consultant who

specialises in endocrynology. ( deletions in X chromosome can lead to auto

immune issues) she tested her antibodies-she is positive. few months on at

another visit, i requested test results-again. was told that her iron was

'normal'. I asked " which part?, ferritin, hb, saturation?) from that point

on the consultant would not speak to me. I asked for reference ranges, he would

not answer. I managed to get out of him that her ferritin is 33 ( I dont know

the range) I requested the blood results again, he said that he would post them

to me with his summary, he didnt of course. The summary states that he told me that

ferritin of 33 would not cause tiredness(!!!!! )

[Guest guest]

Thanks Sheila, I should have written to him before now, but they do, and

shouldn't, intimidate me. This is the 4th endo we've been to so far-I know my

daughter desperately needs me to fight her corner-but think I've ran out of

steam a little after all theses years of going from one consultant to another

about genetics, podiatry, endo, hearing , leaning disability teamm ect. I've had

to insist on everything, and thanks to you and another group, Unique, who told

me which genetic tests to ask for, we have got a long way. I worry that doctors

will see me as a trouble maker, how do I word the letter to this new Endo who is

supposed to know about genetics and Endo? I don't know who is left apart from

the good Drs Peatfeild and Skinner. I have iron from my own precription, but

dare not give her it though I know she needs it. The Endo said that she was not

falling asleep at school, they don't see her on a morning. She has a learning

disability, when she is

tired, she crys and can get verbal. Thanks for the support, I really don't know

what, I would have done, or my family would have done, if the principle carer

was unable to get out of bed. Looking forward to the conference. Jan xx