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Can someone talk me through Thyroid tests please?

(20 Posts)
BabyDubsEverywhere Fri 15-Apr-16 18:57:57

I have been reading through thyroid uk and postson here but I think I am just confusing myself.

I have my recent results here and I don't understand why my GP tells me it 'okay' and not to worry but to be retested in 2-3 months... its been a 12 months having 2-3 month testing but he wont tell me why? the last results before these, that I didn't get the results of, the GP called me and said my results looked like I have a thyroid issue (its in my family too) and he needed one more set of bloods before he could start treatment. Well I had those done and instead of discussion or treatment I have just been told I need to retest again in 2-3 months?

I have read up on what I need to ask for next time, I had asked for full tests to be done this time but they weren't...

TSH level 4.8 miu/1 (0.27 - 4.2)
Free T4 13.9 pmo1/L (12.3 - 20.2)

The GP told me before I was symptomatic and he started all these tests off, he is generally a great GP and feel pretty lucky to have one who listens and will refer on etc... but I don't understand whats going on and I would like to be better informed before I see him next. Could someone explain what these results mean as though they were talking to a 5 years old :D

slowandfrumpy Sun 17-Apr-16 11:39:15

TSH level 4.8 miu/1 (0.27 - 4.2)
Free T4 13.9 pmo1/L (12.3 - 20.2)

These are the levels you have now?

This is similar to the levels that I had when I was first tested. I was told to wait as well.

I went on to become hypothyroid (was 8 within a year or two) and in the end was so frustrated I paid 180 for a private consultation with an endocrinologist. I was diagnosed with hashimotos disease (I had a tiny goitre) and given thyroxine (low dose to start, and then escalating). I felt much better immediately.

I noticed that the GP was generally happy if my TSH was around 4, but that the endocrinologist was happier if it was around 2 (which is what the Americans prefer as well). I feel much better on 2 (I was always high energy before developing hypothyroidism).

I definitely had symptoms of hypo with a TSH of 4/5. I slowed down. My mind was fuzzy. My periods were heavier. My hair started falling out and I was low in spirit. I wasn't sure if this was down to thyroid though, as they were also so vague. I wondered if I was depressed or getting old (I was 35 so that was a bit ridiculous). The thyroxine was transformatory.

In short: your results mean you are the very edges of what is considered acceptable for a functioning thyroid in the UK. But if you were in the US you might well be treated as their normal range is narrower. What you do next partly depends on whether you have symptoms (which you can google). If you have a family history of thyroid disorder you could ask to be tested for hashimotos (which is a disease affecting the thyroid) as that might also be helpful for the doctor to know.

marmiteontoast76 Sun 17-Apr-16 11:45:11

Might be useful to get your thyroid antibody levels tested too as these give a better indication of what's going on. Normal range is below 35.

BabyDubsEverywhere Sun 17-Apr-16 16:40:31

Thank you for your replies, I really appreciate it. Yes, these are the most recent tests. They have been calling me for retesting every 3 months for a year, but I don't have the other results because when they said its okay, but come back in three months I just took them at their word really. Its was only reading on here that I needed to see the scores that made me go in and get this last batch.

I have a family history of auto immune diseases and my sister has hashimotos but it wasn't until she moved to Dubai that she finally got this diagnosis. I have quite a few symptoms, my hair is brittle and falling out, my mood is very very low and I just cant shake it. I'm bipolar so I get depressed, but this feels different to me and none of my usual tricks are working to help it. I generally feel so ill, its like I have constant flu, everything aches and I am so tired I can hardly function. I am huge, i eat a meal a day, if that some days as i feel so sick with pain, but i cant lose weight. Theres others but these are the main things affecting my day to day life... I am literally living on pain killers.

I am going to request the other tests and from reading on here the B12 and Vit D too. I feel really unconfutable with doctors generally, it feels like I am asking to be ill or something, but I just can't carry on like this. I find they put anything psychological down to my Bipolar, and any pain down to my Joint Hypermobility Syndrome. sad

cobaltblue27 Sun 17-Apr-16 19:54:58

Hi Baby,
So sorry you're having a tough time. I have recently had several thyroid tests where my results were almost exactly the same as yours. Like you I have some familiarity with autoimmune disorders, as I have recently been diagnosed with Addisons's (where the immune system attacks the adrenal glands), and the majority of people with Addison's disease also have Hashimoto's. The thing that confirmed that I had Hashi's was that I also tested positive for the thyroid antibodies-has someone tested you for these? If not, ask them to. They told me that because my results were borderline for the Uk (I was also told that I would not be classed borderline in the U.S.), under normal circumstances they would have monitored me for several months to see what happened. However, because I am hoping to have a second child (just to add some more medical drama into my life!) they have started me on a loss dose (25mcg) of thyroxine. I am not sure how much of a placebo effect is in play, but I have felt much better already, much more stable mood (I had been suffering awful panic attacks), and more energy. Could you ask your GP to refer you to endocrinologist? Or otherwise def get the thyroid antibody test done. Good luck, and know you're not alone! X

BabyDubsEverywhere Sun 17-Apr-16 20:44:23

Glad to hear its helping you and good luck with the baby plans!

I think I have been blindly going for tests and not really questioning them for a while. I have regular ECGs done because of my bipolar meds, they are supposed to be annually but they have been every 6 months, last one was 3months and referred to cardiology but no one will say why! Just that there was an anomaly and I need to go to cardiology. The bloody receptionist makes me feel like I'm either too simple to understand so not worth telling me, or they think I am a hypochondriac and wasting their time. Its so frustrating.

I haven't had the antibody test (I requested that for this last round but it wasn't done) so I am booking into see the GP next week to discuss it all and to get him to order the anti body test too. He's quite good usually, I might mention about referring me on to endo due to family history and symptoms. Doctor setting turn me into a mouse, and I hate how often I am there as it is.

(please excuse all my typos, half my keys are missing!)

cobaltblue27 Sun 17-Apr-16 21:15:14

Hi Baby,

You're being too hard on yourself! Anything health-related is pretty nerve-wracking and it is totally understandable to feel a bit freaked out by the related environments. Also, a few doctors do seem to have a tricky attitude where they can assume that people who haven't been to medical school cannot possibly understand the complexity of certain conditions, and so don't try to explain very well. You will have managed complex situations before this in your life, and managed them well. Don't underestimate yourself. Doctors are people just like anyone else. I have taken a more bloody-minded approach, and have said that it is important I understand what is going on, as A) I will then be less anxious and B) I will be able to manage the condition better, both of which will save them time. Feel free to change your doctor too if you want to. I'm backing you! X

BabyDubsEverywhere Sun 17-Apr-16 22:53:16

Thank you Cobalt, I think the 'bloody minded' approach is what I need to do. I have been uncharacteristically passive with my health, I think because there always seems to be so much going on with it. I'm going to take DH with me for moral support I think, this has been dragging on for too long already, I understand if his hands are tied without more results or whatever but I need to know theres some sort of plan at least, or that they are trying to find out what else it could be if it isn't my thyroid (though I think it is!).

thank you for replying flowers

clarella Tue 19-Apr-16 20:20:14

Hi op, I'm so sorry you're going through this. It is an annoying (imo harmful) grey area, but I'm sure the nice guidelines say that if positive for antibodies plus symptoms plus Tsh borderline (so about 4) then do a trial of thyroxine.

Also - they say that Tsh should be below 2 (or 2.5) if concieving, and kept low especially in first trimester.

clarella Tue 19-Apr-16 20:24:11!scenario:1

clarella Tue 19-Apr-16 20:25:17!scenario:3

clarella Tue 19-Apr-16 20:28:26

Print these out and show GP - have antibodies been tested, as it indicates they could. Trial dose could be started.

They might not as sometimes it swings up and down and you could risk being sent hyper - so they monitor it. However I think antibodies help to decision make.

Deciding to become pregnant seems to trigger thyroxine treatment too.

This is an indepth description of it all including the proposal to reduce Tsh upper level to 3.

clarella Tue 19-Apr-16 20:31:35

Presence of antibodies help to swing it though symptoms and goitre could too:

*•*Consider offering levothyroxine treatment if:
◦The person has a goitre.
◦Their TSH level is rising.
◦The woman is pregnant or planning pregnancy (see Scenario: Preconception or pregnant).
*•*Consider offering a trial of treatment if the person has symptoms compatible with hypothyroidism.
◦Prescribe treatment for a sufficient length of time to be able to judge whether there is symptomatic benefit, see Prescribing information.
◦Only continue treatment if there is a clear improvement in symptoms.
◦If treatment is continued, once stable, measure TSH annually and alter the levothyroxine dose to maintain the TSH level within the reference range.

ivykaty44 Tue 19-Apr-16 20:39:23

I would ask your GP why when you feel sluggish have brittle hair that is falling out and have a TSH that isn't within the normal zone he wants you to wait some more, what is it that he's waiting for? For you to get a lot worse before starting treatment.

If someone had a fractured leg would they send you home with a crutch and tell you to be careful but wait a while before we put the leg in a plaster cast to mend? Then wait some more hobbling around with a broken leg - it would be ridiculous...!

It's no different with thyroid problems why would a doctor make you wait when you are hobbling around feeling sluggish, hair dropping out and not feeling well...

BabyDubsEverywhere Tue 19-Apr-16 21:32:01

Clarella, thank you for that, so informative, I will start making my way through the links... I need to get a handle on what could be going on before I see the GP next. I'm making a list of anything that could be relevant to take in with me, I forget half of what I intend to say, heads so foggy!

ivykaty44, that is how it feels tbh, like I said everything gets put down to bipolar or hypermobility. He is waiting for a consultant letter to send me to the pain clinic, but I don't want to just manage pain, (lets face it, that means loads of painkillers and just putting up with it) when some of this agonising joint pain at least could be something else. Particularly as the pain isn't just in my joints as it should be, its everywhere, like constant flu. It feels like they are waiting for me to be delivered in a box before they will do anything. So depressing..

Thanks for the replies though, certainly feel better armed now!

clarella Wed 20-Apr-16 21:39:13

Are you on lithium?

BabyDubsEverywhere Thu 21-Apr-16 16:07:48

No, quetiapine, which can also affect your thyroid over time (hence the need for annual full bloods to be taken). I can't get an appointment until Tuesday but I am armed with info now (and taking DH to speak up for me if I fail grin )

tb Thu 21-Apr-16 18:42:54

There is a really good questionnaire in the book Thyroid Power. The book is well worth getting. The questionnaire in word format has columns for "absent, appeared, disappeared" to note beside each question.

Questionnaire taken from Thyroid Power by Richard L Shames MD and
Karilee Halo Shames RN PhD

Physical Signs of Low Thyroid
These include:

Slow body movements and/or slow speech
Sluggish eye movements or slow pupil light reflex
Prominent bags under eyes
Abnormality in shape, size, consistency, or texture of the thyroid gland
Difficulty in swallowing on command
Skin that is excessively dry or rough
Water retention, especially in the area of the face
Slow pulse
Low blood pressure
Hard-to-elicit or slow-moving ankle reflexes
Loss of the outer one-third of eyebrows

Basal Temperature Test
Taking of early morning temperature while lying down immediately on waking. If average temperature differs from 98ºF by 1 degree or more than this could indicate a sluggish metabolism in the presence of other symptoms.

Self- Assessment

1Additional Symptoms
Do you have:
Significant fatigue, lethargy, sluggishness, or history of low thyroid at an earlier age
Hoarseness for no particular reason
Chronic recurrent infection(s)
Decreased sweating even with mild exercise
Depression, to the point of being a bothersome problem
A tendency to be slow to heat up, even in a sauna
Constipation despite adequate fibre and liquids in diet
Brittle nails that crack or peel easily
High cholesterol despite good diet
Frequent headaches (especially migraine)
Irregular periods, PMS, ovarian cysts, endometriosis
Unusually low sex-drive
Red face with exercise
Accelerated worsening of eyesight or hearing
Palpitations or uncomfortably noticeable heartbeats
Difficulty in drawing a full breath for no apparent reason
Mood swings, especially anxiety, panic or phobia
Gum problems
Mild choking symptoms or difficulty swallowing
Excessive menopausal symptoms, unrelieved by oestrogen
Major weight gain
Aches and pains in limbs, unrelated to exertion
Adult acne, eczema or severe dry skin
Vague and mild chest discomfort unrelated to exercise
Feeling off balance
Annoying burning or tingling sensations that come and go
Experience of being colder than other people around you
Difficulty of maintaining standard weight with sensible food intake
Problems with memory, focus or concentration
More than normal amounts come out in the brush or shower
Difficulty in maintaining stamina throughout the day

2Related conditions
Have you ever had:
Any other autoimmune disorders, such as:
Rheumatoid arthritis
Sjorgen’s syndrome
Biliary cirrhosis
Myasthenia gravis
Multiple sclerosis
Crohn’s disease
Ulcerative colitis
Thrombocytopaenia (decreased blood platelets)*

Prematurely grey hair
Anaemia especially due to B12 deficiency
Persistent unusual visual changes
Rapid cycle bipolar disorder
Raynaud’s syndrome
Mitral valve prolapse
Carpal tunnel syndrome
Persistent tendonitis or bursitis
Atrial fibrillation
Calcium deficiency
Attention deficit disorder
Neck injury such as whiplash or blunt trauma

3Family history
Have any of your blood relatives ever had:
High or low thyroid, or thyroid goitre
Prematurely grey hair
Complete or partial left-handedness
Rheumatoid arthritis
Sjogren’s syndrome
Biliary cirrhosis
Myasthena gravis
Multiple sclerosis
Crohn’s disease
Ulcerative colitis
Thrombocytopaenia (decreased blood platelets)*

4Physical Signs
Have you or your doctor observed any of the following:
Low basal temperature in early morning (average of <97.6F or < 36.4C over 7 days)
Slow movements, slow speech, slow reaction time
Muscle weakness
Thick tongue (feeling of being too big for mouth)
Swelling of feet
Swelling of eyelids or bags under eyes
Decreased colour of lips or yellowing of skin
Swelling at base of neck (enlarged thyroid gland)
Asymmetry, lumpiness, or other irregularity of the thyroid gland
Swelling of face
Excess ear wax
Dry mouth and/or eyes
Noticeably cool skin
Especially low blood pressure
Decreased ankle reflexes or normal reflexes with slow recovery phase
Noticeably slow pulse rate without having exercised regularly
Loss of outer one-third of eyebrows

Scoring self-assessment – all categories
First question in bold – 5 points
All other questions – 1 point
5Mildly indicative of low thyroid – take action re care and feeding
10Somewhat suspicious for low thyroid – possible action obtain TSH level screening test
15Very suspicious for low thyroid – possible action obtain additional tests
20Likely to be low thyroid – possible action obtain all possible tests to aid diagnosis
>24Very likely to be low thyroid – possible action obtain trial of thyroxine regardless of blood test results

The best thing you can do, if possible, is get angry at the way you are being treated. I had the come back in 3 months, and was even told - once I got a diagnosis that "there might be an exemption from some prescription charges" and told to ask at the reception for a form to apply for this. Yes, there is a lifetime exemption from prescription charges on medical grounds. My GP practice was fund-holding at the time, so don't know if the exemption would have had an effect on this. You, never know, maybe there is pressure on the practice to reduce the number of medical exemptions per practice, I wouldn't be surprised.

It took me 12 years after my initial symptoms - and gaining 70kg in weight - before I got a diagnosis. Then, another 13 years to get the right treatment. I have a long-standing bad habit of flogging myself to keep going with adrenaline, and the symptoms of high levels of adrenaline are hard to distinguish between being over-treated. A GP told me that it was up to me to learn to tell the difference.

The biggest crime in my opinion is that GPs don't let patients manage their condition themselves as they do with diabetics. If every diabetic was given insulin on the basis of 1 blood test result taken anything up to a year (or several years) before, they'd be dropping like flies and GPs would be struck off right, left and centre. The BTA have admitted that at least 25% of the people used for the reference ranges have untreated hypothyroidism, but they don't do anything about it.

The standard dosage - in the US - is 1 µg (microgramme) for every pound of body weight. I've heard of people given 25mcg for years and never having their dose increased. What healthy adult weighs 25lbs?

Good luck OP, and start reading!!

There's also the Mary Shomes forum which has details of recommended specialists, doctors, etc

clarella Fri 22-Apr-16 09:42:16

Being on the med might complicate it but it shouldn't - I have two friends on lithium. One did manage to get treated and Tsh was around that level, but managed to bring it down. The other is worried about being pushed into mania.

clarella Fri 22-Apr-16 09:44:53

Also, if they are worried about bringing Tsh down and affecting things bipolarwise, it's worth remembering that due to the long half life of t4, a low dose could be taken every other day or every two days to fine tune it.

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