Hi , I'm new here and have been suffering many debilitating symptoms since the birth of my last child 8 yrs ago . Dr no help at all , said depression. Changed surgeries 2 more times to find this depression status has stuck and i am so frustrated and demoralised with how I am treated. I have always suspected hyperthyroidism and have paid for private consults which were cut short as GP influenced the consultant in the referral letter.
I really need to find someone who will listen and help me. My symptoms are worsening , especially heart and sob and muscle weakness.
Has anyone found someone they can recommend ? I am willing to travel.
Thank you xx
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williamsa
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If you post your recent thyroid blood test results members will advise whether you are hyper or hypo thyroid. It may save you unnecessary time and expense seeing another specialist. Most private consultants require a letter of referral from a GP but you can contact louise.warvill@thyroid uk.org.uk to ask for a copy of the list of endocrinologists recommended by members.
Low ferritin, vitamin D, B12 and folate can cause musculoskeletal pain, breathlessness, fatigue and low mood similar to hypothyroidism so it may be worth asking your GP to test them or arrange your own private tests from Blue Horizon, Genova and City Assays via thyroiduk.org.uk/tuk/testin...
As Clutter suggests, get a print-out with the ranges from the surgery. We are entitled to them for our own records. We can also post if we have queries. Some surgeries ask for a nominal sum to cover paper/ink. Your situation is not uncommon.
You might well be hypothyroid after the birth of your child - that's quite common but sometimes it settles down. Also, if your TSH hasn't risen sufficiently you wont be diagnosed. Before the blood tests patients were diagnosed on their symptoms alone. Much better system. I shall give you a couple of links which might be helpful. The first, read from the 3rd question on.
It amazes me that they don't know the clinical symptoms of hypothyroidism and won't prescribe unless of our TSH tells them so but there is no blood test for depression but will give you antidepressants.
If you've not had a recent blood test for your thyroid hormones, ask for one and make the appointment as early as possible as TSH is highest then. Also ask for Vit D, iron, ferritin and folate. Also ask for a Free T3 when they do your thyroid hormones. They don't usually or the lab wont if TSH is 'in range'.
T3 is the Active thyroid hormone that drives our whole system and our brain contains the most, so if we don't have sufficient T3, nothing works properly. You can get a private Free T3 blood test.
Thank you for your reply and info, I really appreciate it .
Will t3 alone be sufficient or do I need to get the full range of thyroid tests done including antibodies. I was considering getting them done privately with Blue Horizon. I can't face battling with the GP and him patronising me.
You just know when something s not right in your body and it's so frustrating when GP s fob you off with anti depressants .
Williamsa, may be an idea to get TSH, FT4 and FT3 plus antibodies. Your symptoms are consistent with hyperthyroid and hypothyroid which could mean you have Hashimoto's autoimmune thyroid disease which causes hypothyroidism eventually.
Thank you Clutter. I suspected that I may have hypo and hyper as I have bad chills too and some days my eyes are extremely sunken and others really puffy, and although I am much too thin I barely have an appetite now but am not losing weight in fact I have put some on which is rare for me.
I've tried to supplement with vitamins but I became intolerant to them plus spicy food , chocolate and alcohol. They all cause rapid heart rate and anxiety lasting hours. Is this common with these conditions ?
Is it possible that something would show up on the blood tests one day and not another ?
Williamsa, TSH and FT3 fluctuate according to circadian rhythms. TSH is highest around midnight/1am and lowest around 13.00 which is why blood draws are advised as early in the morning as possible. FT3 lags behind TSH by about 90 minutes.
The fluctating symptoms, food intolerances and anxiety sound typical of Hashimoto's and hypothyroidism. Doctors aren't great at dealing with autoimmune thyroid disease, they treat the resulting hyper or hypothyroidism when bloods are abnormal and not the underlying condition.
Hi Clutter , thanks for all the advice, it's great talking to you all on here . I feel like I'm going mad sometimes lol . It's such a relief to hear someone say they recognise my symptoms and that it's not just me trying to fit my symptoms with something. Do you mind me asking how you are so knowledgeable and if you have thyroid issues too and if so have you resolved them.
Williamsa, I got a Hashi diagnosis when a nodule was investigated but no treatment as bloods were euthyroid. The nodule was compressing my windpipe so a hemilobectomy was performed to ease my breathing and swallowing. The biopsied tumour was cancerous so I had a completion thyrodiectomy 3 months later. My Hashi hyper/hypo swings that I had been told were nothing to do with my thyroid stopped after thyroidectomy, presumably because there was no long a thyroid to target.
I was recovering but after radioactive iodine ablatement I was switched from Liothyronine (T3) to Levothyroxine (T4). I became very unwell and was largely bedridden for 15 months. All I could do was read and research although I was so brain fogged I struggled to remember most of what I read then. I found that Levothyroxine only caused me a lot of adverse effects which cleared 3 months after I stopped taking it and started again when I resumed it. I found taking T3 with it calmed the adverse effects and have been relatively well since although I still need to build stamina and fitness after being inactive for such a long time.
I know what you mean re ignoring our symptoms but the unfortunate fact is that nowadays they don't know them. Whereas doctors were trained (before 60's) of all clinical symptoms and treated according to them. As I've said before, they only diagnose us by the TSH level and ignore symptoms, whereas for depression there's no blood test but will prescribe on symptoms (it just doesn't make sense).
Definitely get your blood tests done. It's good to have a helpful doctor but they have to toe the line otherwise are persecuted and may lose their licence.
You can get well through self-help and a big factor is that because we're dealing with hormones and not drugs, our body lets us know if we take too much and either miss out next day's dose then reduce slightly.
Hi Shaws, my GP doesn't want to help he sits back in his chair with a bored look on his face and has said you don't want to look too hard or you ll eventually find something and you have to think how you d deal with that then! I couldn't believe it . He asks private consultations " not to investigate this lady fully as there's nothing wrong with her" . I would like to see him live in my body for 1 day and then say that. Needless to say I don't go to the doctors at all now.
First, get a copy of your most recent blood test results. I think you've already said that you are going to have some done and antibodies as Clutter suggested.
Your GP should do Vit B12, Vit D, iron, ferritin and folate so get these done as well in the NHS.
When you've got these post on a new questions and you will get suggestions. The other blood tests you can have at any time but thyroid hormones should be done first thing .
If you put on your Profile a short resume of your health issues, so that you don't need to answer the same questions and members have a rough idea of your history.
If you click on Clutter's name, hers is very good.
You've been ill long enough and there has to be something not quite right as you wouldn't have been complaining all these years.
Most recently, panic attacks out of the blue , woke me from sleep. Any time night and day, even though I am not stressed or a worrier or panicked.Felt like all nerves were going to fail / have a nervous breakdown. Extremely debilitating.
Rapid heart rate whilst sitting / lying down . Can last for hours. Happens out of the blue, like a switch being flicked on.
Heart pounds after walking to toilet at night ( 10 paces) takes at least 5 mins to subside.
Heart feels very weak , like it's being strained.
Intolerance to heat/ exercise.
Thinning hair
Very dry itchy skin , red dry eyes (optician suspected sjogrens).
Constant thirst which is never satisfied.
Hoarse voice , constant in last few weeks.
Constantly feel dehydrated and hungover feeling. Brain fog.
At least 5 toilet trips at night.
Insomnia ( not because of toilet trips).
Droopy eyelid intermittently.
Facial spasms on left side of face.
Feel very shaky all over and visible shaking of hands.
All symptoms vary daily but have increased in amount presenting and severity over time.
I've had tsh done a while back but have not got the results. I was told all ok.
Only thing ever queried by GP was high calcium reading - 10.4 .
After researching I thought maybe parathyroid but was told that I was making the reading high by maybe being stressed !
My maternal grandmother had a goitre and had her thyroid removed re hyper. My cousin has hypo problems , same side of family.
Have you had a fasting blood glucose test? You mentioned:
"... rapid weight loss of 2 stone, despite eating huge meals plus constantly snacking in between on chocolate bars , craving sugar .
Constant thirst which is never satisfied.
Constantly feel dehydrated and hungover feeling. Brain fog.
At least 5 toilet trips at night."
All of which are recognised as classic signs of diabetes. If you would like information regarding the signs and symptoms of diabetes doled out in the same friendly and knowledgeable fashion as thyroid-related info here on TUK, truck on over to diabetes.co.uk. The community there is wonderful.
Hi Hose 1975, thanks for the advice and link . I had a test done years ago but nothing recently . I have researched these things for so many years. It seems like common sense to me to request certain tests to rule things out but my GP will not budge.
I did read somewhere that all the symptoms quoted above can also point to thyroid issues too, so it's difficult to know what to do. I have wasted so much money with my GP influencing apps negatively. Sjogrens is another possibility , the rheumatologist was very certain I had that and stated blood results could still be negative even if I had it. He wanted my GP to do a barrage of bloods and ct scan etc but my GP had a " frank" discussion with the rheumatologist and he too closed down on me even though I paid ! Grrr so frustrating .
I'd approach your GP (or another in the same practice) and ONLY mention the weeing, thirst, carb craving and tiredness. Say you understand that these could indicate diabetes and could you have a fasting blood glucose test, please? The risk is that by mentioning all the other symptoms you blur the message. You could also buy a home blood glucose monitor and test yourself. Make sure your fingers are clean, dry and warm first thing in the morning; it'll make it easier to get the blood out.
Hi not sure where in Wales you are but I've just posted a message asking whether GP's in Wales are restricted in how they can treat or refer thyroid patients. I am with a GP in Monmouth and have been treated similarly to you although my symptoms aren't nearly as bad. I have just found a nutritionist and functional medicine practitioner in Hereford and am having tests and initial consultation with her next week. Send me a message if I can help in any way. Sorry just seen date - 3 year ago!!!
Hi I saw Debbie Lewis in Hereford. Functional medicine practitioner. She has a website. She did blood tests and I was diagnosed with hashimotos due to very high anti bodies plus my B12 levels were very low. She advised following a 30 day adrenal reset diet per Iszabella Wentz' hashimotos protocol. However I have been totally crap at trying it as it seemed so restrictive, I wasn't in a good place mentally and had daughter with severe exam anxiety. I am going to try to properly get a grip now though because six months on and I feel dreadful. Fatigue, joint pain, severe anxiety, insomnia, weight gain urgh! I think my hashimotos was triggered after 6 years in a very stressful job followed by two pregnancies in15 months. I'm 56 now and my kids are 16 and 17. I'm finding it difficult to wade my way through the different elements to establish the right supplements and diet....B12, K, D, iron, selenium. There's so much information and of course some only effective if taken with others to boost absorption. Happy to help further if I can. I live between Monmouth and Ross.
Hi again just remembered that after I saw Debbie Lewis I posted my blood test results and her advice in here and was warned off following some elements regarding vitamin supplements It's very confusing to know who to trust especially on back of complete lack of interest and dismissal by GPs. I didn't go back to Debbie because of this. I'll find the previous posts and see what was said. What I struggle with is determining the correct dose and type of vitamins and whether the same can be achieved with diet. My B12 was so low it was in the pernicious anaemia range. Marz has been very helpful and responds very quickly usually. I've let things slide but am feeling so bad that I have to make a concerted effort now 😊. Good luck.
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Sorry just seen date - 3 year ago!!!
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