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(50 Posts)
bumpsadaisy11 Sat 13-Jan-18 13:03:12

My daughter was diagnosed with Hypothyroidism in May of last year.

Her TSH was originally 12.9 & was put on 25mg of Levothyroxine, this was quickly increased to 50mg, which is what she is on now.

Her TSH is now within normal limits (1.65) but her symptoms are still almost crippling her & have not shown any sign of improvement.

When she gets home from college, she spends her evening wrapped in several blankets, leaning up against her radiator, as she is cold to the bone & can't get warm.

She is constantly exhausted all of the time. We spoke to the Dr's but they aren't interested in referring her to an endocrinologist, as her TSH are within normal limits!

Any advice would be very much appreciated, as it makes me so sad to see my DD suffering so much sad

mumpoints Sat 13-Jan-18 13:11:24

In my experience Hypothyroidism help on the nhs is terrible. If you can afford it it may be worth taking her for private tests (about £60 when my sister had it done) and getting her T3 and T4 results done and whatever else they suggest.

If a private doctor changes her medication, just get them to write to your (nhs) GP to change the dose/type of mediaction.

Remember all prescriptions will be free (ALL, not just thyroid related) for your daughter for life because of this condition.

SeaToSki Sat 13-Jan-18 13:13:50

This is probably going to get me flamed, but here goes. Does she have any of the 25mg tablets left? If she does, she could take one in addition to the 50mg pill 3 days a week and see how she feels. If she feels better then go back to the doctor, confess and ask for a blood test to check she is still in the normal range (which can go as low as 0.3) and then ask for a prescription to keep taking that dose.

In my experience, doctors are terrible at treating thyroid disorders, they just look at the numbers on the page and forget they are treating human beings. The reason that there is a normal range, and not a normal number, is that normal people are meant to have different levels of thyroxine - some lower, some higher - and unless you have a baseline of what your levels was before it went out of whack, you have to treat the symptoms.

Now my rant is over, if she does this, you need to try for about 4 weeks to really see if its helping, although she might feel better in a few days. The symptoms of taking too much thyroxine are similar to having an adrenalin rush, feeling amped up, difficulty sleeping, loosing weight, heart racing, hot flushes. If she gets any of these symptoms, go back to the 50mg.

Bossbaby12 Sat 13-Jan-18 13:14:54

I had hypothyroidism which has gradually sorted itself out. I Just want to point out that it isn't always a life long condition, it can improve. I would get her to go back to the doctors and push for further tests. I was horrendously tired and anxious before I was diagnosed and I know how bloody horrible it feels. I hope she manages to get it sorted!

mumpoints Sat 13-Jan-18 13:19:00

Bossbaby12 I didn't know that!

Floralnomad Sat 13-Jan-18 13:24:20

I would also recommend finding the money for a private endocrinology opinion , I’ve had hypothyroidism for years being ‘managed ‘ by the GP and never realised how mismanaged it’s been until I saw a private endo last year ( for something else) . Now he’s managing it things are much clearer .

CrumblyMumbly Sat 13-Jan-18 13:26:20

Hi, sorry to hear about your daughter. I'm afraid you are going to become an expert in this condition because the GP/endo certainly won't be. Read, read, read, - join the Thyroid UK health Unlocked forum. Just being 'in range' is not good enough - TSH needs to be below one and 6 weekly blood tests are needed and small incremental rises until this is the case. Also vitamin levels need to be at optimum levels too - lots for you to find out give you ammunition to advocate for your girl and for her to know this herself - it's a long road which I am on too - good luck. Get a print out of all your results and post on the forum and you will get excellent advice.

bumpsadaisy11 Sat 13-Jan-18 13:28:50

Thank you so much to you all, for the replies.

It is a very lonely journey & I feel so bad as a mother, who is not able to help my DD. She keeps asking me 'When am I going to feel OK?', 'Why do I still feel so poorly?' It breaks my heart. sad sad

threestonetogo Sat 13-Jan-18 13:39:24

It took me almost 3 years to get a diagnosis and to find a NHS doctor who agreed that my TSH Level should be around 1for optimum health, A NHS endocrinologist had dismissed me saying my levels were in range, but I was unable to function and could only work part time with a day off in between to recover. A private blood test through Blue Horizon also showed that I had Hashimoto’s Thyroiditis and less than optimal vitamin D.

With appropriate doses of levothyroxine, vitamin d supplements and a gluten free diet, I am now working full time again.

CrumblyMumbly Sat 13-Jan-18 13:49:12

Don't feel bad - you're a great mother who obviously loves her daughter. Sadly this isn't a quick fix and we tend to trust health professionals. I was left on 25mcg for 2 years so I know from bitter experience that you have to educate yourself as much as possible. You are entitled to a print out of blood tests and then you can ask the real experts on Thyroid UK for their advice. The right supplements in combination work wonders too. Hang in there and give your daughter the tools to deal with this - sending virtual Lioness strength...

Bossbaby12 Sun 14-Jan-18 13:10:57

Just wanted to add. My hypothyroidism may have been post natal (not 100% certain yet), but it can still be managed if properly diagnosed.

californiadreamer Wed 17-Jan-18 19:43:54

Hi there
I am sorry to hear about your daughter.

I was diagnosed as hypothyroid 12 years ago. After quite a lengthy battle with doctors etc I now take natural dessicated thyroid, which I pay for. This may not be for everyone but the most important advice I would give you is to educate yourself about thyroid disorders. Your own knowledge and understanding of the issue is the best tool. GPs, and most endocrinologists, are not very knowledgeable unfortunately.

There is a book called Stop The Thyroid Madness which gives lots of information about blood tests and normal ranges and everything to do with symptoms and treatment. The TSH lab is absolutely useless at telling you where you are in terms of the health of your thyroid but doctors still swear blind by it. The book (and Facebook groups) advocate natural thyroid replacement. Again this might not be for you and I would never be anti- synthetic thyroxine (my brother takes it and he's fine). I think it's about educating yourself so you can make an informed choice for your daughter.

Unfortunately your doctor won't thank you for presenting them with any information that contradicts the usual line of taking Levo and you will have to battle.

I was lucky enough to have a very enlightened endo who I had to fight tooth and nail to be referred to.

Good luck and I hope your daughter feels better soon.

Horses4 Wed 17-Jan-18 19:50:04

My daughter (7) is hypothyroid, her tpo antibodies were >1000 at diagnosis. She has, however, a superb endo and I would urge you to push for referral. She also has Raynaud’s, juvenile arthritis and uveitis and other bordering autoimmune inflammatory issues and it is common for autoimmune conditions to co-exist. GPs simply don’t have the specialist expertise (and neither should they), but they should not block an onward referral.

I’m also hypothyroid with pernicious anaemia, it is eminently manageable with a good doctor and time to get the meds right.

I absolutely get how lonely and scary it is, but it’s common and not the end of her or your world. Good luck.

bumpsadaisy11 Wed 17-Jan-18 20:03:41

Thank you so very much to all you gorgeous ladies, you have given such useful advice & wonderful support.
I took my DD back to the doctors this morning, because I am really worried about how she is barely existing at the moment.
It was a complete waste of time & he actually told us that because her TSH is in the normal range, then all of her symptoms cannot be being caused by her Underactive Thyroid!!
He told her that it was just because the weather was cold & she was stressed (she isn't!) that she felt the way she did.
I told him how worried I was about her, but he didn't seem to care!
I don't know if it is of any use to any of you lovely ladies, but I have found a book that was recommended by a top endocrinologist. it is called Tears Behind Closed Doors by Diane Holmes. I ordered my copy today.
Thank you once again, your help really is very much appreciated smile smile

NorfolkNellie Wed 17-Jan-18 20:19:48

Look at diet as well. Autoimmune diet - gluten/dairy/sugar free - made a massive, massive difference for me as did taking a pro biotic. Izabella Wentzs book on Hashimotos tells you exctly what you need to do. The blog Hypothyroid Mom has lots of very useful information. Worth getting a private thyroid test as well - Medichecks is good value. Thyroid care in the UK is terrible - It has taken me 15 years to get diagnosed. There are some great private Drs. I have heard of a good NHS one in Sussex if you are near there?

shouldwestayorshouldwego Wed 17-Jan-18 20:32:57

Going gluten free has helped me a lot. I think that for the first time in years I am digesting my food properly. My daughter is always very cold, but that is a symptom of her hypermobility, so that might be an avenue to investigate. Making sure she doesn't take the tablets with milk/cheese/calcium might help the absorption of the thyroxine.

Alittleconcerned1980 Wed 17-Jan-18 20:35:33


The reason who didn’t know that is because it’s incorrect.

Hypothyroidism, if correctly diagnosed, is a life long condition.

Alittleconcerned1980 Wed 17-Jan-18 20:36:46


Why 15 years to her diagnosed.
It’s very simple blood tests that reveal whether your thyroid is working properly.

NorfolkNellie Wed 17-Jan-18 21:09:44

They didn't test thyroid for ages - said I had depression, anxiety and I took anti depressants. When they did eventually test they came back low but in range - which I now know doesn't mean anything. I paid privately to get my thyroglobulin tested - it was 610 when should be under 100. The reason I investigated my thyroid seriously was beacuse I have had breast cancer in the last year and there is a strong link to thyroid not working properly.

MyRelationshipIsWeird Wed 17-Jan-18 21:37:07

I came on here to mention the book California has mentioned, Stop The Thyroid Madness. It can be a bit daunting at first to try and take in all this info (especially when in a hypo fog, at least your DD has you to help guide her through it, poor thing).

I now take natural dessicated pig thyroid, which I buy from overseas. Obviously I'd much rather not be risking it with unprescribed medication, but Levo is often crap (I complained about one brand which was later found to be sub-standard and taken off the market) and some people can't convert it (T4) to the useful T3 at a cellular level, so end up with loads of symptoms still remaining despite 'normal' test results.

I can't afford to go privately and NHS don't seem to care much, so with the help of the groups on FB and the book I self-medicate, using trusted resources.

I really need to look at diet as I know I could do better in that area. I'm a great believer in putting in the good stuff and hoping my body will forgive me for the bad! It might be worth looking at vitamins too - B12 and D are common ones to be deficient in and can have very similar symptoms as underactive thyroid.

I hope your DD can get it sorted, it's a miserable way to live.

HadronCollider Wed 17-Jan-18 22:46:55

My private doc has me on Selenium 200mg. Selenium is CRITICAL to convert T4 to T3. Also iron also extremely important in conversion. I am also on magnesium, zinc and Iodine. And that's just for starters. There is sooo much more to treating hypothyroidism than just popping a levo tab once a day!

californiadreamer Thu 18-Jan-18 10:21:37

TSH labs are not a correct diagnostic tool for thyroid disfunction. TSH labs test the functioning of the pituitary gland not the thyroid gland.

Sometimes, the TSH level needs to be way below what's considered normal by doctors before you start feeling good again but again this needs to be managed by a good endocrinologist.

Some say there may be hundreds of people suffering with undiagnosed thyroid conditions because doctors rely on the TSH test.

A good endocrinologist and your own knowledge is the key.

Ekphrasis Fri 26-Jan-18 22:16:01

Place making to comment later.

I was dx very young and it took a long time to get better.

Her Tsh could be better tbh. But I had a type of chronic fatigue that just didn't go over night as a result of being ill.

Ekphrasis Fri 26-Jan-18 22:19:42

Some qs- What is her diet like? Does she eat dairy and fish? Is she constipated? Is she on the skinny side? How are her periods? Does she take any multivitamins and if so what?

bumpsadaisy11 Sat 27-Jan-18 10:09:31

Hi Ekphrasis . Thank you for your reply.Her diet is good. She doesn't eat a lot of dairy, she loves fish & doesn't like meat much.
She is not constipated or on the skinny side.
Her periods are horribly heavy & painful & she feels really nauseous most of the morning.
She doesn't take any vitamins at the moment.
She is getting worse & worse, she was nearly in tears s this morning as she is fed up of feeling tired cold & sick all of the time.
Despite being on 50mg of levothyroxine her TSH level has gone from 1.65 up to 3.58!!
We are so worried that we are considering paying for a private endocrinologist as this is taking over her whole life sadsad

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